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Modules

Data is collected in a modular format, separated by topics. The initial data entry phase (referred to as “initial visit”) collects information for the entire set of base modules. Modules are essentially “topics”. The participant is reminded to update on a six monthly basis to capture changes in seizures, medications, therapies, pathology, clinic attendance or clinical trial participation. Illnesses and medical complications are collected annually and updates to behaviour and development, communication and sleep are made annually until the individual reaches 10yrs of age then collection reverts to every two years.
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Behaviour, Development, Epilepsy/ Seizure, Feeding/Eating, Illness, Sleep
Module 1
Module 1 – Newborn and infancy history
Feeding, behaviours, health problems and developmental behavioural in the newborn and infancy period. 1.1 Did the child reside with you in (ANGNewbornInfancyReside) No Code Question Response 0.1.1 ResideNewborn The first 4 weeks of their life? 1 – Yes;2 – No (Range/ RadioButton; PVG YesNo) 0.1.2 ResideNewborn The first 1-12 months of their life? 1 – […]

Feeding, behaviours, health problems and developmental behavioural in the newborn and infancy period.

1.1 Did the child reside with you in (ANGNewbornInfancyReside)
NoCodeQuestionResponse
0.1.1ResideNewbornThe first 4 weeks of their life?1 – Yes;
2 – No (Range/ RadioButton; PVG YesNo)
0.1.2ResideNewbornThe first 1-12 months of their life?1 – Yes;
2 – No (Range/ RadioButton; PVG YesNo)
1.1 Newborn (0-1 month) (ANGNewbornHistory)
NoCodeQuestionResponse
1.1.2ANGHOWFEDINFANCYDescribe feeding during infancy1 – Breastfed;
2 – Bottlefed;
3 – Other
1.1.6aANGAgeStoppedBreastfeeding2At what age was breastfeeding stopped? 
1.1.6bANGAgeStoppedBottlefeeding2At what age was bottlefeeding stopped? 
1.1.3ANGFeedingDifficultiesDoes/did the individual with Angelman Syndrome experience feeding difficulties as a newborn?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 - Unknown
1.1.4ANGBreastFedEffortIf difficulties were experienced, was assistance used at any time in their infancy (e.g. lactation support, syringes, spooning in pumped milk)? Please note that there is an option to provide more details belowAs above
1.1.5ANGIfUnableToBreastBottleFeedIf the individual was unable to breast or bottle feed, please describe how he/she is/was fed as a newborn.Participant specifies
1.1.8ANGRefusalToNurseIs/was there refusal to nurse?
1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 - Unknown
1.1.9ANGCouldNotLatchCan/could not latch?As above
1.1.10ANGIneffectiveSuckIneffective suck?As above
1.1.11ANGBitingWas there biting?As above
1.1.15ANGIrritablefeedDoes/did he/she appear irritable in association with feeding?As above
1.2 Newborn (0-1 month): Health and Behavioural (ANGNewbornHistory2)
NoCodeQuestionResponse
1.1.12ANGVomitingWas there vomiting?As above
1.1.13ANGArchingWas there arching?As above
1.1.14ANGExcessiveMovementDoes/did he/she show excessive movements?As above
1.1.1ANGDifficultyMaintainingTempDoes/did the individual with Angelman Syndrome have difficulties maintaining or regulating proper body temperature?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 - Unknown
1.1.17ANGNewbornSleepWas there difficulty sleeping?As above
1.1.18ANGNewbornCryExcessPlease describe your child’s crying1 – Excessive/ constant;
2 – Rarely or never cried;
3 – Unusual sounding cry
1.1.19ANGOthBehListWere there any behavioural or developmental concerns? (check any/ all that apply)1 – Excessive irritability;
2 – Developmental delays;
3 – Unusual or repetitive movements;
4 – Unusual or repetitive behaviours;
5 – Smiling/ Laughter;
6 – Did not communicate needs (eg cry when hungry);
7 - Did not respond/ seem interested in caregiver/ people;
8 – Did not seem interested in surroundings;
9 - Other
1.1.16ANGOthBehProblemsPlease specify 
1.1.20ANGOtherHealthProblemsWere there any other health problems? (check any/ all that apply)1 – Gastrointestinal problems/ reflux;
2 – Failure to thrive; Intolerances or allergies;
3 – Breathing/ respiratory difficulties;
4 – Seizures;
5 – Vision/ Eye problem;
6 – Illness requiring medical care;
7 - Other
1.1.21ANGOtherHealthProblemsYESPlease describe 
1.3 Infancy (1-12 months): Temperament (ANGInfancyHistory)
NoCodeQuestionResponse
1.2.1ANGHappyIs/was the individual with Angelman Syndrome happy in the first 12 months of their life?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 - Unknown
1.2.2ANGPlacidIs/was he/she easy going in the first 12 months of their life?As above
1.2.3ANGEasyGoingIs/was he/she easy going in the first 12 months of their life?As above
1.2.4ANGAffectionateIs/was he/she affectionate in the first 12 months of their life?As above
1.4 Infancy (1-12 months): Feeding (ANGInfancyHistory2)
NoCodeQuestionResponse
1.2.5ANGSuckSwallowAre/were there any difficulties with suck/swallow?As above
1.2.6ANGFailGainAre/were there any difficulties with failure to gain weight?As above
1.2.7ANGRefluxGastroOesophAre/were there any reflux/gastro/oesophageal problems?As above
1.2.8ANGTransitionSolidAre/were there any difficulties with transitioning to solid food?As above
1.5 Infancy (1-12 months): Respiratory (ANGInfancyHistory3)
NoCodeQuestionResponse
1.2.9ANGAsthmaWheezingAre/were there any difficulties with asthma/wheezing?As above
1.2.10ANGCoughingAre/were there any difficulties with coughing?As above
1.2.11ANGpneumoniadiffAre/were there any difficulties with pneumonia?As above
1.2.12ANGbronchitisAre/were there any difficulties with bronchitis?As above
 
1.6 Infancy (1-12 months): Other Health and Behavioural (ANGInfancyHistory4)
NoCodeQuestionResponse
1.2.16ANGInfancySleepWas there difficulty sleeping ?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 – Unknown (Range/ DefaultWidget;
ANGBEHDEVFUNCTIONSCALE)
1.2.17ANGInfancyCryExcessPlease describe your child’s crying1 – Excessive/ constant;
2 – Rarely or never cried;
3 – Unusual sounding cry
1.2.18ANGOthBehListWere there any behavioural or developmental concerns ?1 – Excessive irritability;
2 – Developmental delays;
3 – Unusual or repetitive movements;
4 – Unusual or repetitive behaviours;
5 – Smiling/ Laughter;
6 – Did not communicate needs ;
7 - Did not respond/ seem interested in caregiver/ people;
8 – Did not seem interested in surroundings;
9 - Other
1.2.13ANGOthBehProblemsAre/were there any other behavioural issues during this period? 
1.2.19ANGOtherHealthListWere there any other health problems ?1 – Gastrointestinal problems/ reflux;
2 – Failure to thrive; Intolerances or allergies;
3 – Breathing/ respiratory difficulties;
4 – Seizures;
5 – Vision/ Eye problem;
6 – Illness requiring medical care;
7 - Other
1.2.15ANGOtherHealthProblemsYESPlease describe 
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Clinics/ Diagnostic Tests, Epilepsy/ Seizure, Fine Motor, Gross Motor, Illness, Speech
Module 2
Module 2 – History of diagnosis and results
Age of diagnosis, results and the pathway to diagnosis 2.1 History of Diagnosis (ANGHistoryOfDiagnosis) No Code Question Response 2.1.1a ANGAgeDiagnosis2 Age at diagnosis 2.1.3 ANGCurrentPatientAge Current age of the individual with Angelman Syndrome in years Calculated from DOB 2.1.4a ANGParentDx Did you suspect Angelman syndrome prior to the official diagnosis? 2.1.4 ANGWhoMadeDiagnosis Who made the […]
Age of diagnosis, results and the pathway to diagnosis
2.1 History of Diagnosis (ANGHistoryOfDiagnosis)
No Code Question Response
2.1.1a ANGAgeDiagnosis2 Age at diagnosis
2.1.3 ANGCurrentPatientAge Current age of the individual with Angelman Syndrome in years Calculated from DOB
2.1.4a ANGParentDx Did you suspect Angelman syndrome prior to the official diagnosis?
2.1.4 ANGWhoMadeDiagnosis Who made the diagnosis? (Check all that apply) 1 – Paediatrician/GP; 2- Neuropaediatrician; 3 – Neurologist; 4 – Geneticist; 5 – Other;
2.1.5 ANGDiagnosisOther Please specify
2.1.6 ANGNeurologicalSymptoms History that led to the Angelman Syndrome syndrome Diagnosisdiagnosis (Check all that apply) 1 – Microcephaly; 2 – Developmental delay; 3 – Motor development; 4 – Unusual behaviours; 5 – Lack of language; 6 - Abnormal neurological exam; 7 – Seizures; 8 – Ataxia; 9 – Happy disposition/ laughter; 10 – Light pigmentation ; 11 – Eye/ vision problems; 12 – Gastrointestinal reflux; 13 – Failure to thrive; 14 – Hypotonia ; 15 – Illness/ injury requiring medical care led to diagnosis; 16 – Other;
2.1.7 ANGHistoryOther Please give details
2.1.8 ANGMisdiagnosis If there was a misdiagnosis prior to Angelman syndrome, please select (Check all that apply): 1 – Autism; 2 – Seizure Disorder; 3 – Cerebral Palsy; 4 – Global Development Delay; 5 – Prader-Willi Syndrome; 6 - Other; 7 – Unknown
2.1.9 ANGMisdiagnosisOTH Please comment
2.1.10 ANGDualDX Do they currently have a dual diagnosis ? 1 – Yes, 2 – No, 3 – Unknown
2.1.11 ANGDualDxWhat2 Please list any other current diagnoses the individual has received (Please do not include any misdiagnoses prior to the diagnosis of Angelman Syndrome). 1 – Autism Spectrum Disorder; 2-– Epilepsy; 3 – Lennox-Gastaut syndrome; 4 – Cerebral Palsy; 5 – Global developmental delay; 6 – Other rare disease (please state); 7 - Other, please specify.
2.1.12 ANGDualDxWhatOther Please list other diagnoses
2.2 Individual with Angelman Syndrome Results (ANGPatientResults)
No Code Question Response
2.2.1 ANGGeneticTest Has the individual with Angelman Syndrome had a genetic test for Angelman Syndrome? 1 – Yes; 2 – No; 3 - Unknown
ANGClinicalDx Have they received a clinical diagnosis of Angelman Syndrome? 1 – Yes; 2 – No; 3 - Unknown
2.2.1a ANGGeneticTestKnown Do you know what type of tests were performed? 1 – Yes; 2 – No;
2.2.2b ANGGeneticTestType2 What type of test was performed? 1 – Array; 2 – Methylation; 3 – Mutation; 4 – FISH
2.2.3 ANGDNAMethylAbnormalResult What was the test result? 1 – Chromosome deletion ; 2 – Chromosome deletion Class 1; 3 – Chromosome deletion Class II; 4 – Chromosome deletion Class III; 5 – Chromosome deletion Class IV; 6 - Chromosome deletion Class V; 7 – Paternal uniparental disomy ; 8 – Imprinting centre defect; 9 – UBE3A Mutation (type unknown); 10 – UBE3A Mutation (Truncating); 11 – UBE3A Mutation (Missense); 12 – UBE3A Mutation (nonsense); 13 – UBE3A Mutation (Benign); 14 – Mosaic; 15 – Unknown/ Clinical
2.3 Individual with Angelman Syndrome Result Files (ANGResultFile)
No Code Question Response
2.3.1 ANGBloodResultFile Please upload any diagnosis test results you have
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Module 2
Module 2.5 – 6 Month Check Up
An interim check in with caregivers to see if there are any changes in seizure activity, medications or therapies. Please enter your child/ adult’s current age, height and weight (6moAgehw) No Code Question Response A.0.1 6MoAge Age in years and months A.0.1 6MoHeight Height in cm: A.0.1 6MoWeight Weight in kg: In the past 6 […]
An interim check in with caregivers to see if there are any changes in seizure activity, medications or therapies.
Please enter your child/ adult’s current age, height and weight (6moAgehw)
No Code Question Response
A.0.1 6MoAge Age in years and months
A.0.1 6MoHeight Height in cm:
A.0.1 6MoWeight Weight in kg:
In the past 6 months has there been any changes in your child/ adult’s (6motreatment)
No Code Question Response
A.1.1 6MoEpilepsy Epilepsy 1 – Yes – please report changes in “My Child/ Adult’s Treatment – Change in seizure activity”; 2 – No (6MoEpilepsyScale)
A.1.2 6MoSeizure How have your child/ adult’s seizures changed (check all that apply) 1 – Increased in frequency; 2 – Decreased in frequency; 3 – Change in seizure activity or symptoms; 4 – Other (please describe) (6MoSeizureScale)
A.1.3 6MoSeizureOth If other, please describe.
A.1.4 6MoMed Medications 1 – Yes – please report changes in “My Child/ Adult’s Treatment – Started/ Changed or Stopped Medication”; 2 – No (6MoMedScale)
A.1.5 6MoMedChange How has your child/ adult’s medication changed in the last 6 months? Check all that apply 1 – Started a new medication; 2 – Stopped a medication; 3 – Changed the dosage or frequency of a current medication; 4 – Other (please describe)
A.1.6 6MoMedChangeOth If other, please describe.
A.1.7 6MoTherapy Therapies 1 – Yes – please report changes in “My Child/ Adult’s Treatment – Started/ Changed or Stopped Therapy”; 2 – No
A.1.8 6MoTherChange How has your child/ adult’s therapy service use changed in the last 6 months? Check all that apply 1 – Started a new therapy; 2 – Stopped a therapy; 3 – Changed the duration or frequency of a current therapy; 4 – Other (please describe)
A.1.9 6MoTherChangeOth If other, please describe.
In the past 6 months, has your child/ adult (6motestclinic)
No Code Question Response
A.2.1 6MoPath Undergone any pathology or testing? 1 – Yes – please report in “My Child/ Adult’s Treatment – Pathology and Diagnostics”; 2 – No
A.2.1 6MoTrial Started or stopped taking part in any clinical trials or studies? 1 – Yes - please report in “My Child/ Adult’s Treatment – Clinical trials and studies”; 2 – No
A.2.1 6MoClinic Attended an Angelman clinic?
 
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Behaviour, Feeding/Eating, Illness
Module 3
Module 3 – Illnesses or Medical Problems
This module is completed when entering the patient registry and again annually to collect information on symptoms related to Angelman syndrome such as Reflux, constipation, strabismus etc. No Code Question Response MedNewFol Is this the first time you are completing this module? 1 – Yes, first time; 2 – No, follow up B.1.1 12MoMedIll Has […]
This module is completed when entering the patient registry and again annually to collect information on symptoms related to Angelman syndrome such as Reflux, constipation, strabismus etc.
No Code Question Response
MedNewFol Is this the first time you are completing this module? 1 – Yes, first time; 2 – No, follow up
B.1.1 12MoMedIll Has there been any changes to the following medical conditions in your child/ adult in the last 12 months? 1 – Gastrointestinal reflux; 2 – Constipation; 3 – Vomiting with feeds; 4 – Gagging; 5 – Pneumonia; 6 – Strep throat; 7 – Toe walking; 8 – Tight heel cords; 9 – Scoliosis; 10 – Dental problems ; 11 – Obesity; 12 – Tube feeding; 13 – Strabismus; 14 – Cortical visual impairment; 15 – Ear infections (Otis media); 16 – Auditory processing disorders; 17 – Cortical myoclonus (tremors); 18 – Diagnosed allergies; 19 – Intolerances; 20 - Other
B.1.2 12MoActFood Has there been any changes to the following in your child/ adult?
3.1 Gastrointestinal Problems - Has your child/adult ever experienced any of the following: (GastrointestinalProblems)
No Code Question Response
3.3.1a ANGGastroesophagealReflux2 Gastroesophageal reflux? 1 – None; 2 – Never formally diagnosed, but compatible history; 3 – Yes, diagnosed
3.3.2 ANGGastroesophageal RefluxStat What is the current status of their  gastroesophageal reflux? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.3.3a ANGGastroRefluxDiagnosed2 What was their age at diagnosis?
3.3.5 ANGGastroRefluxDiagnosedSever What is the severity? 1 – Mild; 2 – Moderate; 3 – Severe; 4 – Varied; 5 – Unknown
3.3.6 ANGGastroRefluxDiagnosedTreat Was medical treatment required? 1 – Yes; 2 – No; 3 – Unknown
4.3.7 ANGGastroRefluxDiagnosedSurg Was surgical treatment required? 1 – Yes; 2 – No; 3 – Recommended, but not done; 4 – Unknown
3.3.8a ANGGastroRefluxRecurred2 What was their age at which the gastroesophageal reflux recurred?
3.3.10 ANGGastroRefluxResolvedSever What is the severity when recurring? 1 – Mild; 2 – Moderate; 3 – Severe; 4 – Varied; 5 – Unknown
3.3.11 ANGGastroRefluxRecurredTreatme Was medical treatment required when recurring? 1 – Yes; 2 – No; 3 – Unknown
3.3.12 ANGGastroRefluxRecurredSurgey Was surgical treatment required when recurring? (Please describe surgery in the Medical History and Hospitalisation module) 1 – Yes; 2 – No; 3 – Recommended, but not done; 4 – Unknown
3.3.13a ANGGastroRefluxResolved2 What was their age when resolved?
3.4.1 ANGEverConstipation Constipation? 1 – Yes all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown
3.4.2 ANGMedConstipation Status What is the current status of their  constipation? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 - Unknown
3.4.3 ANGConstipationSever What is the severity during episodes? 1 – Mild; 2 – Moderate; 3 – Severe; 4 – Varied; 5 - Unknown
3.4.4 ANGConstipationManage How is the constipation (or regular bowel function) managed? (check all that apply) 1 – Dietary; 2 – Medication; 3 – Other
3.4.5 ANGConstipationOth Please specify.
3.5.1 ANGVomitingWithFeeds Vomited with feeds (after 12 months of age)? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown
3.5.2 ANGVomitingWithFeeds Status What is the current status of their  vomiting with feeds? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.5.3 ANGVomitingWithFeeds Medical Was medical treatment required? 1 – Yes; 2 – No; 3 – Unknown
3.5.4 ANGVomitingWithFeedsSurgery Was surgical treatment required? 1 – Yes; 2 – No; 3 – Recommended, but not done; 4 – Unknown
3.6.1 ANGGagging Gagging (after 12 months of age)? 1 – Yes all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown
3.6.2 ANGGaggingStatus What is the current status of  their gagging? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.6.3a ANGGaggingSituations Please indicate the situation/s when gagging occurs 1 – Eating/ Feeding/ Drinking; 2 – Mornings/ after sleeping; 3 – Sensory ; 4 – Emotional situations ; 5 – Illness ; 6 – Taking medication; 7 – Seizure; 8 – Brushing teeth; 9 – Infancy only 10 - Other
3.6.3 ANGGaggingYes Please specify
3.2 Throat/ Respiratory Problems - Has your child/adult ever experienced any of the following: (ThroatRespiratoryProblems)
No Code Question Response
3.1.1 ANGPneumonia Pneumonia? 1 – Yes; 2 – No; 3 – Unknown
3.1.2 ANGMedPneumonia Status What is the current status of their pneumonia? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.1.3 ANGPneumonia Aspiration Was it related to aspiration? 1 – Yes; 2 – No; 3 – Unknown
3.1.4 ANGPneumoniaFreq Please indicate the number of episodes per year 1 – One off episode; 2  – 1-2 episodes ; 3 - 3 or more episodes
3.1.5 ANGPneumoniaSever What is the severity during episodes? 1 – Mild; 2 – Moderate; 3 – Severe; 4 – Varied; 5 – Unknown
3.2.1 ANGStrepThroat Strep throat? 1 – Yes; 2 – No; 3 – Unknown
3.2.2 ANGMedStrepThroat Status What is the current status of their  strep throat? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.2.3 ANGStrepThroatFreq Please indicate the number of episodes per year 1 – One off episode; 2  – 1-2 episodes ; 3 - 3 or more episodes
3.2.4 ANGStrepThroatSever What is the severity during episodes? 1 – Mild; 2 – Moderate; 3 – Severe; 4 – Varied; 5 – Unknown
3.3 Musculoskeletal Problems - Has your child/adult ever experienced any of the following: (MusculoskeletalProblems)
No Code Question Response
3.7.1 ANGToeWalking Toe walking? 1 – Yes all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown
3.7.2 ANGToeWalkingStatus What is the current status of their tight heel cords/ toe walking? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.7.3 ANGToeWalkingTreatment Please indicate any treatments used (Check all that apply. Please describe surgery in the Medical History and Hospitalisation module) 1 – Ankle-foot orthosis ; 2 – Surgery; 3 – Physical therapy;4 – No treatment
3.7.1a ANGTightHeelCords Tight heel cords? 1 – Yes all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown
3.7.2a ANGTightHeelStatus What is the current status of their tight heel cords? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.7.3a ANGTightHeelTreatment Please indicate any treatments used (Check all that apply. Please describe surgery in the Medical History and Hospitalisation module) 1 – Ankle-foot orthosis (AFO); 2 – Surgery; 3 – Physical therapy; 4 – No treatment
3.8.1 ANGSCOLIOSIS Does (or did) the individual exhibit scoliosis (curvature of the spine)? 1 – Yes; 2 – No; 3 - Unknown
3.8.3 ANGScoliosisTreatmentUsed If yes to scoliosis, please indicate any treatments used (Check all that apply) 1 – Observation; 2 – Backbrace; 3 – Surgery; 4  – Other
3.8.4a ANGAgeScoliosisDiagnosed2 What was their age at diagnosis?
3.8.6a ANGAgeBracingYears2 What was their age when bracing was commenced?
3.9.1 ANGDentalProblems Does (or did) the individual with Angelman Syndrome have any dental problems? 1 – Yes; 2 – No; 3 - Unknown
3.9.2 ANGDentalProblems Status What is the current status of  their dental problems? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 - Unknown
3.9.3a ANGDentalProblemsFillings Please indicate the number of fillings 1 – None, 2 – 1-4, 3 – 5-9, 4 – More than 10
3.4 Nutrition and Feeding - Has your child/adult ever experienced any of the following: (NutritionFeeding)
No Code Question Response
3.10.1a ANGOverweight Overweight? 1 – Yes; 2 – No; 3 – Unknown
3.10.1 ANGObesity Classified as obese? For a definition of obesity, please visit: https://www.who.int/dietphysicalactivity/ childhood_what/en/ 1 – Yes; 2 – No; 3 – Unknown
3.10.2 ANGObesityStatus What is the current status of their obesity? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.10.3a ANGObesityAge2 Please indicate the age of onset
3.11.1 ANGFailuretoThrive Food refusal/ failure to thrive over 12 months of age? 1 – Yes; 2 – No; 3 – Unknown
3.11.2 ANGFailuretoThrive Status What is the current status of their  failure to thrive? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.11.3a ANGFailureToThriveOnsetYears2 What was their age at onset of failure to thrive?
3.11.6a ANGFailureToThriveYears2 What was the duration of failure to thrive?
3.12.1 ANGTubeFed Tube feeding (after 12 months of age)? 1 – Yes; 2 – No; 3 – Unknown
3.12.2 ANGTubeFedStatus What is the current status of their  tube feeding? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.12.3 ANGTubeFedYesType Please indicate the type used (Check all that apply) 1 – NG tube; 2 – OG tube; 3 – Gastrostomy tube
3.12.4a ANGTubeFedYears2 What was the duration of tube feeding?
3.12.7 ANGTubeYesReason Please indicate the reason for placement (Check all that apply) 1 – Inability to feed orally as infant; 2 – Gastroesophageal reflux disease; 3 – Vomiting; 4 – Food refusal; 5 – Complications; 6 – Failure to thrive
3.12.8 ANGTubeHow Please indicate how they are  tube fed (Check all that apply) 1 – Medications; 2 – Nutrition using bolus feeds; 3 – Nutrition using overnight feeds
3.12.9 ANGTubeComplications If there were complications with tube feeding, please describe
3.10.5 ANGObesityHeight What is your child/ adult’s current height in metres/metres? (metres/meters – imperial to metric converter: https://www.metric-conversions.org/length/feet-to-meters.htm)
3.10.8 ANGObesityWeight What is your child/ adult’s current weight  in kg? (kg - - imperial to metric converter: https://www.metric-conversions.org/weight/pounds-to-kilograms.htm)
3.10.10 ANGBMImetric BMI Calculated
3.10.12 ANGObesityActivity Please describe  their activity level. 1 – Decreased; 2 – Increased; 3 – Normal; 4 – Unknown
3.10.13 ANGObesityExcessiveIntake Please describe their  food intake. 1 – Decreased; 2 – Increased; 3 – Normal; 4 – Unknown
3.10.14 ANGObesityFoodSeeking Does  they exhibit food seeking behaviours? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 – Unknown
3.5 Sensory Problems - Has your child/adult ever experienced any of the following: (SensoryProblems)
No Code Question Response
3.13.1 ANGStrabismus Strabismus ? Strabismus is a vision condition in which a person can not align both eyes simultaneously under normal conditions. One or both of the eyes may turn in, out, up or down. An eye turn may be constant  or intermittent . 1 – Yes; 2 – No; 3 – Unknown
3.13.2 ANGStrabismusStatus What is the current status of their strabismus? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.13.3 ANGStrabismusTreatment Please indicate any treatments used (Check all that apply. Please describe surgery in the Medical History and Hospitalisation module) 1 – Glasses; 2 – Patching; 3 – Surgery; 4 No treatment; 5 – Other
3.13.5 ANGStrabismusRecurTreat Were recurrences of strabismus treated? 1 – Yes; 2 – No; 3 – Unknown
3.13.6 ANGMedCortical Cortical visual impairment? 1 – Yes; 2 – No; 3 – Unknown
3.13.7 ANGMedCorticalStatus What is the current status of their cortical visual impairment? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.14.1 ANGOtitisMedia Ear infections (otitis media)? 1 – Yes; 2 – No; 3 – Unknown
3.14.2 ANGOtitisMediaStatus What is the current status of  their otitis media? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.14.3 ANGOtitisMediaYes Please indicate the number of episodes per year 1 – One off episode; 2 – 1 – 5 episodes per year; 3- > 5 episodes per year
3.14.4 AngMedHearing Have they ever had their hearing tested? 1 – Yes; 2 – No; 3 - Unknown
3.14.5 ANGHearingResult What were the results? 1 – Typical/Normal; 2 – Abnormal; 3 – Unknown
3.6 Neurological Problems - Has your child/adult ever experienced any of the following: (ANGNeurological)
No Code Question Response
3.15.1 AngMedAuditory Auditory processing disorders? (Auditory processing disorder (APD) is a hearing problem that affects about 5% of school-aged children. Children with this condition can't process what they hear in the same way other children do because their ears and brain don't fully coordinate) 1 – Yes; 2 – No; 3 – Unknown
3.15.2 ANGMedAuditoryStatus What is the current status of their auditory processing disorders? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.15.3 AngMedCorticalMyoclonus Cortical myoclonus (tremors)? 1 – Yes; 2 – No; 3 – Unknown
3.15.4 ANGMedCorticalMyoclonusStatus What is the current status of their cortical myoclonus? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.15.5a ANGMedCorticalOnsetYears2 What was their age at onset of cortical myoclonus?
3.15.8 ANGMedCorticalSeverity What is the severity? 1 – Mild; 2 – Moderate; 3 - Severe; 4 – Varied; 5 – Unknown
3.7 Allergies and Intolerances - Has your child/adult ever experienced any of the following: (ANGIntolerances)
No Code Question Response
4.1.1 ANGAllergies Diagnosed allergies? (An allergy occurs when a person’s immune system reacts to substances in the environment that are harmless for most people. These substances are known as allergens and are found in house dust mites, pets, pollen, insects, moulds, foods and some medicines.) 1 – Yes; 2 – No; 3 – Unknown
4.1.4 ANGMedAllergieStatus What is the current status of their  allergies? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 - Unknown
4.1.2 ANGAllergiesType Please indicate the types of allergies 1 – Dairy products; 2 – Gluten or wheat; 3 – Egg; 4 – Nuts; 5 – Sugar; 6 – Other food; 7 – Environmental triggers; 8 – Seasonal; 9 – Medications; 10 – Insect bites or stings; 11 – Other
4.1.3 ANGAllergySpecify Please specify details of allergies
4.2.1 ANGIntolerances Intolerances? (Intolerance is an inability to eat a food or take a drug without adverse effects. Unlike an allergy, it does not involve the immune system or cause severe allergic reactions such as anaphylaxis.) 1 – Yes; 2 – No; 3 – Unknown
4.2.3 ANGMedIntolerance Status What is the current status of their  intolerances? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
4.2.2a ANGIntoleranceType Please indicate the types of intolerances (Check all that apply) 1 – Dairy products; 2 – Gluten or wheat; 3 – Egg; 4 – Nuts; 5 – Sugar; 6 – Other food; 7 – Environmental triggers; 8 – Seasonal; 9 – Medications; 10 – Insect bites or stings; 11 – Other
4.2.2 ANGIntolerancesDetails Please specify details of intolerances
3.8 Other Medical Conditions (ANGOther)
No Code Question Response
3.16.1 AngMedConditionYes1 Has your child/ adult had any other medical conditions that have not been covered? 1 – Yes; 2 – No
3.16.2 AngMedCondition1 If yes, what is the condition?
3.16.3 ANGMedCondition1Status What is the current status of this condition? Please indicate the current status of this medical condition in your child/ adult. 1 – Currently experiencing; 2 - Intermittently experiencing/ episodic; 3 – Resolved; 4 – Unknown
3.16.4a ANGMedOnsetYears1a What was the age at onset of the condition?
3.16.7 ANGMedSeverity1 What is the severity, if applicable? 1 – Mild; 2 – Moderate; 3 - Severe; 4 – Varied; 5 – Unknown
3.16.9 ANGMedRecurFreq1 If episodic or recurring, how often does the condition recur? 1 – One off episode; 2 – Less than once a year; 3 – 1 – 5 episodes per year; 4 - 5 or more episodes per year
3.16.10 ANGMedOtherComment1 Do you have any other comments about this condition?
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Module 4
Module 4 – Hospitalisations and Surgical Procedures
This module is completed when entering the patient registry and remains static, it collects information on the pathway to diagnosis including symptoms, diagnosing professional/s and any alternate diagnoses. 4.3 Hospitalisations and Surgical Procedures (ANGHospitalisations) No Code Question Response 4.3.1 ANGHospitalVisits Has your child/ adult ever been hospitalised? 1 – Yes; 2 – No; 3 – […]
This module is completed when entering the patient registry and remains static, it collects information on the pathway to diagnosis including symptoms, diagnosing professional/s and any alternate diagnoses.
4.3 Hospitalisations and Surgical Procedures (ANGHospitalisations)
No Code Question Response
4.3.1 ANGHospitalVisits Has your child/ adult ever been hospitalised? 1 – Yes; 2 – No; 3 - Unknown
4.3.3 ANGSurgicalProcedures Has your child/ adult had any surgical procedures? 1 – Yes; 2 – No; 3 - Unknown
4.3.4 ANGSurgeryNumber Please indicate the number of surgeries
4.3.5 ANGAnaesthetic Has your child/ adult ever undergone anaesthesia? 1 – Yes; 2 – No; 3 - Unknown
4.3.6 ANGAnaestheticNumber Please indicate the number of anaesthesias 1- None; 2 – One only; 3 – 2 – 5; 4 – 5 – 10; 6 – More than 10
4.4 Details of Hospitalisation/Surgery (ANGHospitalVisit1)
No Code Question Response
4.4.3a ANGAgeHospitalVisit1a Child/ adult's age at admission
4.4.5 ANGHospitalVisit1Reason Hospitalisation reason 1 – Seizure; 2 – Feeding problems; 3 – Surgery; 4 – Infection; 5 – Other
4.4.6 ANGHospSurgery1 If surgery, what was the reason? (e.g. Corrective alignment (toe walking, scoliosis), strabismus
4.4.7 ANGHospOther1 If other, what was the reason?
4.4.8 ANGHospitalVisit1DaysInHospital Number of days in hospital
4.4.10 ANGHospitalVisit1LevelOfCare Level of care 1 – Low (medical ward); 2 – Medium (high dependency unit); 3 – High (Intensive care) ; 4 – Emergency department
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Communication, Speech, Therapy/ Therapies
Module 4
Module 4.5 – Communication
This module is completed when entering the patient registry and updated annually for children under ten then every two years. Information is collected on the methods of communication used, the efficacy of those methods (including specific questions on AAC). 4.5.1. Speech,Language and Communication (ANGBEHDEVSPEECHLANGUAGE) No Code Question Response 4.5.1.3 ANGBEHDEVALLLANG Please indicate all language communication […]
This module is completed when entering the patient registry and updated annually for children under ten then every two years. Information is collected on the methods of communication used, the efficacy of those methods (including specific questions on AAC).
4.5.1. Speech,Language and Communication (ANGBEHDEVSPEECHLANGUAGE)
No Code Question Response
4.5.1.3 ANGBEHDEVALLLANG Please indicate all language communication forms used 1 – Moans; 2 – Babbles ; 3 – Uses an intentional sound to attract attention; 4 – Single words ; 5 – 2-3 word phrases; 6 – Longer phrase speech
4.5.1.5 ANGBEHDEVNUMWORDS How many words (or word approximations)? 1 – 1-5; 2 – 5-10; 3 – More than 10 Range/RadioWidget; ANGNUMWORDSPVG)
4.5.1.6 ANGSpeakFrequency How often do they use words or word approximations 1 – All the time; 2 – Most of the time; 3 – Some of the time; 4 – Rarely; 5 – Never; 6 – Unknown
4.5.1.7 ANGSpeakAge At what age did they say their first word?
4.5.1.2 ANGBEHDEVALLLANG If yes, please indicate their most effective verbal language communication. 1 – Moans; 2 – Babbles ; 3 – Uses an intentional sound to attract attention; 4 – Single words ; 5 – 2-3 word phrases; 6 – Longer phrase speech
4.5.1.4 ANGBEHDEVBESTUNDERSTANDING Please indicate their most effective ability to respond to requests. 1 – Single word such as no; 2 – Simple phrase command such as “Don’t touch”; 3 -Commands - single step- longer sentence i,e, “Go to your room now”; 4 -Commands - 2 step e.g “Go to your room and bring back your water bottle.”; 5 - Commands - 3 step; 6 – None of the above
4.5.2.11a ANGBEHDEVPREFCOMMBEST2 What is your child/ adult’s method of communicating with you? Check all that apply 1 – Spoken words; 2 – Gestures; 3 – Signing; 4 – Visual pictures; 5 – Eye tracking devices; 6 – Low tech AAC ; 7 – Mid tech ; 8 – High tech AAC
4.5.2. Please rate your child/ adult ability to use the following communication methods/systems: (ANGBEHDEVCOMMUNICATION)
No Code Question Response
4.5.2.1 ANGBEHDEVCOMSpoken Spoken words 1 - Doesn’t use; 2 - Rarely uses; 3 - Uses for single requests or to express basic wants, needs, observations and ideas regularly; 4 - Communicates effectively with known people; 5 - Communicates effectively with known and unknown people
4.5.2.2 ANGBEHDEVCOMGesture Gestures As above
4.5.2.3 ANGBEHDEVCOMSigning Signing As above
4.5.2.4 ANGBEHDEVCOMVisPic Visual pictures As above
4.5.2.7 ANGBEHDEVCOMEyeTrack Eye tracking devices As above
4.5.2.8 ANGBEHDEVCOMLowTech Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays) As above
4.5.2.9 ANGBEHDEVCOMMidTech Mid tech (big mark switches, tech talks or voice output) As above
4.5.2.10 ANGBEHDEVCOMHighTech High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii) As above
4.5.3. Assisted and Augmented Communication (AAC) Usage (ANGCOMACCINDIV)
No Code Question Response
4.5.3.1 ANGAACSL Has your child/adult participated in speech-language therapy before? 1 – Yes; 2 – No; 3 - Unknown
4.5.3.2 ANGAACCM Have you heard of the Communication Matrix tool?  https://communicationmatrix.org/ 1 - Yes, and I have completed it myself; 2 - Yes, and it has been completed by a third party ; 3 - Yes, I have heard about it but I have not completed it; 4 - No, I have never heard of it
ANGCMMATRIX If you have participated in the Communication Matrix as a caregiver, please record your Matrix ID
ANGCMDATE Administration Date
ANGCMTOTAL Total Score
ANGCMPERCENT Percentage
4.5.3.3 ANGAACUse Does your child/ adult use a form of Augmentative and Alternative Communication ? 1 – Yes; 2 - No ; 3 - Unsure what AAC is and if it is helpful
4.5.3.4 ANGAACInterest If you have not used AAC, are you interested in using AAC with your child/ adult? 1 – Yes; 2 – No
4.5.3.5 ANGAACNo Why not?
4.5.3.6 ANGAACDeny2 If you were denied a form of AAC therapy, what reason was given for this? 1 - Not making progress; 2 - They were told the individual with AS was not a candidate for AAC; 3 - Need to work on skills before introducing AAC; 4 - Not ready for AAC; 5 – Other
4.5.3.7 ANGAACDenyOth Please state
4.5.3.8 ANGAACLoc Where does your child/ adult use AAC? (Select all that apply) 1 – Home; 2 – School; 3 - Speech therapy; 4 - Other
4.5.3.9 ANGAACLocOth Please state
4.5.3.10 ANGAACHome How often do you estimate that they use AAC to communicate at Home? 1 - All of the time; 2 - Some of the time; 3 – Rarely; 4 – Never
4.5.3.10a ANGAACHomeType What type of AAC does your child/ adult use to communicate at home? 2 – Gestures; 3 – Signing; 4 – Visual pictures; 5 – Eye tracking devices; 6 – Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays); 7 – Mid tech (big mack switches, tech talks or voice output); 8 – High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii); 9-Other
4.5.3.10b ANGAACHomeOther If other, please describe
4.5.3.11 ANGAACSchool How often do you estimate that they use AAC to communicate at School? 1 - All of the time; 2 - Some of the time; 3 – Rarely; 4 – Never
4.5.3.11a ANGAACSchoolType What type of AAC does your child/ adult use to communicate at school? 2 – Gestures; 3 – Signing; 4 – Visual pictures; 5 – Eye tracking devices; 6 – Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays); 7 – Mid tech (big mack switches, tech talks or voice output); 8 – High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii); 9-Other
4.5.3.11b ANGAACSchoolOther If other, please describe
4.5.3.12 ANGAACST How often do you estimate that they use AAC to communicate at Speech Therapy? 1 - All of the time; 2 - Some of the time; 3 – Rarely; 4 – Never
4.5.3.12a ANGAACSpeechType What type of AAC does your child/ adult use to communicate at speech therapy? 2 – Gestures; 3 – Signing; 4 – Visual pictures; 5 – Eye tracking devices; 6 – Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays); 7 – Mid tech (big mack switches, tech talks or voice output); 8 – High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii); 9-Other
4.5.3.12b ANGAACSpeechOther If other, please describe
4.5.3.13 ANGAACHear How did you hear about AAC? Select all that apply. 1 – Online; 2 - At a conference; 3 - From another parent; 4 - From a teacher; 5 - From a speech therapist; 6 - From another therapist; 7 - From behavioral services; 8 - From genetics/medical doctor; 9 - Can’t remember/Unknown
4.5.3.14 ANGAACStart How long after diagnosis did you start using AAC? 1 - Upon diagnosis; 2 - Less than three months after diagnosis; 3 - 3-6 months after diagnosis; 4 - 7-24 months after diagnosis; 5 - 2 - 4 years after diagnosis; 6 - 5+ years after diagnosis
4.5.3.15 ANGAACFunction For what function of communication does your child/ adult use AAC with you? Select all that apply. 1 - Make requests; 2 - Reject/refuse; 3 - Make comments ; 4 Express emotional and physical states ; 5 - Label ; 6 - Answer questions; 7 - Call someone ; 8 - Assert independence ; 9 – Greet; 10 - Ask questions; 11 - Direct other’s actions ; 12 - Share personal experiences ; 13 - Share thoughts and ideas; 14 - Express manners
4.5.3.16 ANGAACDevice Does your child/ adult use an electronic communication device for other purposes than AAC? Select all that apply. 1 - Watching videos ; 2 -Listening to music; 3 - Playing games; 4 – Other
4.5.3.17 ANGAACDevOth Please specify
4.5.3.18 ANGAACDurCOM On a typical day, how many hours do they spend using the device for AAC purposes? 1 - Less than 2 hours; 2 - Between 2 and 4 hours; 3 - More than 4 hours
4.5.3.19 ANGAACDurOth On a typical day, how many hours do they spend using the device for other purposes than AAC? 1 - Less than 2 hours; 2 - Between 2 and 4 hours; 3 - More than 4 hours
4.5.3. Assisted and Augmented Communication (AAC) Usage (ANGCOMACCINDIV)
No Code Question Response
4.5.3.1 ANGAACSL Has your child/adult participated in speech-language therapy before? 1 – Yes; 2 – No; 3 - Unknown
4.5.3.2 ANGAACCM Have you heard of the Communication Matrix tool?  https://communicationmatrix.org/ 1 - Yes, and I have completed it myself; 2 - Yes, and it has been completed by a third party ; 3 - Yes, I have heard about it but I have not completed it; 4 - No, I have never heard of it
ANGCMMATRIX If you have participated in the Communication Matrix as a caregiver, please record your Matrix ID
ANGCMDATE Administration Date
ANGCMTOTAL Total Score
ANGCMPERCENT Percentage
4.5.3.3 ANGAACUse Does your child/ adult use a form of Augmentative and Alternative Communication ? 1 – Yes; 2 - No ; 3 - Unsure what AAC is and if it is helpful
4.5.3.4 ANGAACInterest If you have not used AAC, are you interested in using AAC with your child/ adult? 1 – Yes; 2 – No
4.5.3.5 ANGAACNo Why not?
4.5.3.6 ANGAACDeny2 If you were denied a form of AAC therapy, what reason was given for this? 1 - Not making progress; 2 - They were told the individual with AS was not a candidate for AAC; 3 - Need to work on skills before introducing AAC; 4 - Not ready for AAC; 5 – Other
4.5.3.7 ANGAACDenyOth Please state
4.5.3.8 ANGAACLoc Where does your child/ adult use AAC? (Select all that apply) 1 – Home; 2 – School; 3 - Speech therapy; 4 - Other
4.5.3.9 ANGAACLocOth Please state
4.5.3.10 ANGAACHome How often do you estimate that they use AAC to communicate at Home? 1 - All of the time; 2 - Some of the time; 3 – Rarely; 4 – Never
4.5.3.10a ANGAACHomeType What type of AAC does your child/ adult use to communicate at home? 2 – Gestures; 3 – Signing; 4 – Visual pictures; 5 – Eye tracking devices; 6 – Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays); 7 – Mid tech (big mack switches, tech talks or voice output); 8 – High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii); 9-Other
4.5.3.10b ANGAACHomeOther If other, please describe
4.5.3.11 ANGAACSchool How often do you estimate that they use AAC to communicate at School? 1 - All of the time; 2 - Some of the time; 3 – Rarely; 4 – Never
4.5.3.11a ANGAACSchoolType What type of AAC does your child/ adult use to communicate at school? 2 – Gestures; 3 – Signing; 4 – Visual pictures; 5 – Eye tracking devices; 6 – Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays); 7 – Mid tech (big mack switches, tech talks or voice output); 8 – High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii); 9-Other
4.5.3.11b ANGAACSchoolOther If other, please describe
4.5.3.12 ANGAACST How often do you estimate that they use AAC to communicate at Speech Therapy? 1 - All of the time; 2 - Some of the time; 3 – Rarely; 4 – Never
4.5.3.12a ANGAACSpeechType What type of AAC does your child/ adult use to communicate at speech therapy? 2 – Gestures; 3 – Signing; 4 – Visual pictures; 5 – Eye tracking devices; 6 – Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays); 7 – Mid tech (big mack switches, tech talks or voice output); 8 – High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii); 9-Other
4.5.3.12b ANGAACSpeechOther If other, please describe
4.5.3.13 ANGAACHear How did you hear about AAC? Select all that apply. 1 – Online; 2 - At a conference; 3 - From another parent; 4 - From a teacher; 5 - From a speech therapist; 6 - From another therapist; 7 - From behavioral services; 8 - From genetics/medical doctor; 9 - Can’t remember/Unknown
4.5.3.14 ANGAACStart How long after diagnosis did you start using AAC? 1 - Upon diagnosis; 2 - Less than three months after diagnosis; 3 - 3-6 months after diagnosis; 4 - 7-24 months after diagnosis; 5 - 2 - 4 years after diagnosis; 6 - 5+ years after diagnosis
4.5.3.15 ANGAACFunction For what function of communication does your child/ adult use AAC with you? Select all that apply. 1 - Make requests; 2 - Reject/refuse; 3 - Make comments ; 4 Express emotional and physical states ; 5 - Label ; 6 - Answer questions; 7 - Call someone ; 8 - Assert independence ; 9 – Greet; 10 - Ask questions; 11 - Direct other’s actions ; 12 - Share personal experiences ; 13 - Share thoughts and ideas; 14 - Express manners
4.5.3.16 ANGAACDevice Does your child/ adult use an electronic communication device for other purposes than AAC? Select all that apply. 1 - Watching videos ; 2 -Listening to music; 3 - Playing games; 4 – Other
4.5.3.17 ANGAACDevOth Please specify
4.5.3.18 ANGAACDurCOM On a typical day, how many hours do they spend using the device for AAC purposes? 1 - Less than 2 hours; 2 - Between 2 and 4 hours; 3 - More than 4 hours
4.5.3.19 ANGAACDurOth On a typical day, how many hours do they spend using the device for other purposes than AAC? 1 - Less than 2 hours; 2 - Between 2 and 4 hours; 3 - More than 4 hours
4.5.4 Assisted and Augmented Communication (AAC) Usage by Others (ANGCOMACCOTH)
No Code Question Response
4.5.4.1 ANGAACPerson Who else uses the AAC to communicate with your child/ adult? Select all that apply. 1 - Family members; 2 – Friends; 3 - School teachers; 4 - Speech therapists; 5 – Caregivers; 6 – Other
4.5.4.2 ANGAACPerOth Please specify.
4.5.4.3 ANGAACTrain Did you, as a caregiver, receive training on how to use AAC with your child/ adult? 1 – Yes; 2 – No
4.5.4.4 ANGAACTrainWho Please give details of who provided the AAC training to you. Select all that apply. 1 – School; 2 - AAC company directly; 3 - General AAC workshops; 4 - Online training; 5 - Speech therapist; 6 -Other (AACTraining)
4.5.4.5 ANGAACTrainOth Please specify.
4.5.4.6 ANGAACTrainDur How much training have you, as a caregiver, had on using AAC? 1 – None; 2 - Self-trained via e.g. YouTube training; 3 - Up to 1 hour; 4 - Up to 8 hour (1-full day training); 5 - Several days of training
4.5.4.7 ANGAACConfident How confident/comfortable are you, as a caregiver, in using AAC with your child/ adult? 1 – Limited; 2 – Confident; 3 - Highly-confident
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Activities of Daily Living/ Adaptive Behaviours, Behaviour, Communication, Development, Dressing, Feeding/Eating, Fine Motor, Gross Motor, Speech, Toileting/ Continence
Module 5
Module 5 – Behaviour and Development
This module is completed when entering the patient registry and updated annually for children under ten then every two years. This module collects information on gross and fine motor, adaptive behaviours, activities and other behaviours. 5a.1 Please describe these types of muscle tone (ANGMuscleTone) No Code Question Response 5a.1.1 ANGBEHDEVMuscleTrunk How would you describe your […]
This module is completed when entering the patient registry and updated annually for children under ten then every two years. This module collects information on gross and fine motor, adaptive behaviours, activities and other behaviours.
5a.1 Please describe these types of muscle tone (ANGMuscleTone)
No Code Question Response
5a.1.1 ANGBEHDEVMuscleTrunk How would you describe your child/ adult’s muscle tone? 1 – Low; 2 – Medium; 3 – High; 4 - Mixed
5a.1.2 ANGBEHDEVMuscleTrunk2 How would you describe your child/ adult’s muscle tone in his/her trunk? Trunk includes the neck, back and stomach. 1 – Low; 2 – Medium; 3 – High; 4 - Mixed
5a.1.3 ANGBEHDEVMuscleLimbs How would you describe your child/ adult’s muscle tone in his/her limbs? Limbs includes the arms/ hands and legs/ feet 1 – Low; 2 – Medium; 3 – High; 4 - Mixed
5a.2. Current Development: General Impressions (ANGBEHDEVGENERALIMPRESSION)
No Code Question Response
5a.2.1 ANGBEHDEVGENIMPRESS Tick which best applies to your child/ adult’s ability to learn 1 – Continues to learn new things; 2 –Learning is static; 3 Lost some skills in the last year.
5a.2.2 ANGBEHDEVLOSTWHAT If they have lost significant skills, what skills have they lost? 1 – Speech; 2 – Understanding; 3 – Motor
5a.2.3 ANGBEHDEVLOSTMOTOR What motor skills? (Check all that apply) 1 – Walking; 2 – Dressing; 3 – Feeding; 4 – Other
5a.2.4 ANGBEHDEVLOSTMOTOROTH Please describe
5a.3 Other comments (ANGGENERALCOMMENTSec)
No Code Question Response
5a.3.1 ANGGENERALCOMMENT Any other comments about your child/ adult’s development?
5b.1 Current Development: Gross Motor function (ANGBEHDEVMOTORFUNCTION)
No Code Question Response
5b.1.1 ANGBEHDEVMOBILITYBEST Please indicate the individual with Angelman Syndrome’s best mobility 1 – Can’t mobilise; 2 - Rolls across floor; 3 – Crawls; 4 – Shuffles/scoots along seated; 5 - Stands supported but not mobilising; 6 - Stands alone with minimal support; 7 - Stands alone; 8 - Mobilises walking with support; 9 - Mobilises walking with minimal support; 10 - Walks independently but loses balance occasionally; 11 - Walks but very unsteady; 12 - Walks with stable gait; 13 - Runs independently; 14 - Climbs stairs (alternating foot over foot); 15 – Jumps ((Range/
5b.1.2 ANGBEHDEVMOBILITYSUPPORT If they use support, what form of support do they use? (Check all that apply) 1 – Walking frame (walker and gait trainer); 2 – Wheelchair for long distances; 3 – Wheelchair for all mobilisation
5b.1.3 ANGBEHDEVTYPICALGAIT Would you describe your child/ adult’s gait as typical when compared to the typically developing age matched peers? 1 – Yes; 2 – No; 3 – Unknown
5b.1.4 ANGBEHDEVATYPGAIT Please describe your child/ adult's gait 1 – Broad based/ wide; 2 – Lopsided; 3 – Jerky; 4 – Frequent falls; 5 – Gets tired; 6 – Walks on toes; 7 - Walks with knees bent (crouched); 8 – Walks with feet turned in; 9 – Walks with feet turned out
5b.1.5 ANGBEHDEVGAIT Would you describe their gait as: 1 – Getting better; 2 – Stable; 3 – Getting worse
5b.1.6 ANGBEHDEVGAITWORSE Please describe
5b.2 Gross Motor Function - please describe your child/adult's ability to do the following: (GROSSMOTOR)
No Code Question Response
5b.2.1a ANGGROSSMOTORROLLABILITYL Roll across the floor 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.1b ANGGROSSMOTORROLLABILITYDK Or, don't know
5b.2.1c ANGGROSSMOTORROLLFREQL And frequency
5b.2.1d ANGGROSSMOTORROLLAGEL And age? (Age first performed activity)
5b.2.2a ANGGROSSMOTORSITABILITYL Sit up 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.2b ANGGROSSMOTORSITABILITYDK Or, don't know
5b.2.2c ANGGROSSMOTORSITFREQL And frequency
5b.2.2d ANGGROSSMOTORSITAGEL And age? (Age first performed activity)
5b.2.3a ANGGROSSMOTORCRAWLABILITYL Crawl 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.3b ANGGROSSMOTORCRAWLABILITYDK Or, don't know
5b.2.3c ANGGROSSMOTORCRAWLFREQL And frequency
5b.2.3d ANGGROSSMOTORCRAWLAGEL And age? (Age first performed activity)
5b.2.4a ANGGROSSMOTORSHUFFLEABILITYL Shuffles or scoots when seated 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.4b ANGGROSSMOTORSHUFFLEABILITYDK Or, don't know
5b.2.4c ANGGROSSMOTORSHUFFLEFREQL And frequency
5b.2.4d ANGGROSSMOTORSHUFFLEAGEL And age? (Age first performed activity)
5b.2.5a ANGGROSSMOTORSTANDABILITYL Stand up 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.5b ANGGROSSMOTORSTANDABILITYDK Or, don't know
5b.2.5c ANGGROSSMOTORSTANDFREQL And frequency
5b.2.15d ANGGROSSMOTORSTANDAGEL And age? (Age first performed activity)
5b.2.6a ANGGROSSMOTORWALKABILITYL Walk (unassisted) 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.6b ANGGROSSMOTORWALKABILITYDK Or, don't know
5b.2.6c ANGGROSSMOTORWALKFREQL And frequency
5b.2.6d ANGGROSSMOTORWALKAGEL And age? (Age first performed activity)
5b.2.7a ANGGROSSMOTORRUNABILITYL Run 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.7b ANGGROSSMOTORRUNABILITYDK Or, don't know
5b.2.7c ANGGROSSMOTORRUNFREQL And frequency
5b.2.7d ANGGROSSMOTORRUNAGEL And age? (Age first performed activity)
5b.2.8a ANGGROSSMOTORSTAIRSABILITYL Climb stairs 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.8b ANGGROSSMOTORSTAIRSABILITYDK Or, don't know
5b.2.8c ANGGROSSMOTORSTAIRSFREQL And frequency
5b.2.8d ANGGROSSMOTORSTAIRSAGEL And age? (Age first performed activity)
5b.2.9a ANGGROSSMOTORJUMPABILITYL Jump 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.2.9b ANGGROSSMOTORJUMPABILITYDK Or, don't know
5b.2.9c ANGGROSSMOTORJUMPFREQL And frequency
5b.2.9d ANGGROSSMOTORJUMPAGEL And age? (Age first performed activity)
5.3 Fine Motor Function - please describe your child/adult's ability to do the following: (FINEMOTOR)
No Code Question Response
5b.3.1a ANGFINEMOTORHOLDABILITYL Hold things, such as a stuffed toy 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.3.1b ANGFINEMOTORHOLDABILITYDK Or, don't know
5b.3.1c ANGFINEMOTORHOLDFREQL And frequency
5b.3.1d ANGFINEMOTORHOLDAGEL And age? (Age first performed activity)
5b.3.2a ANGFINEMOTORPOINTABILITYL Point to indicate things 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.3.2b ANGFINEMOTORPOINTABILITYDK Or, don't know
5b.3.2c ANGFINEMOTORPOINTFREQL And frequency
5b.3.2d ANGFINEMOTORPOINTAGEL And age? (Age first performed activity)
5b.3.3a ANGFINEMOTORTRANSFERABILITYL Transfer things between hands 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.3.3b ANGFINEMOTORTRANSFERABILITYDK Or, don't know
5b.3.3c ANGFINEMOTORTRANSFERFREQL And frequency
5b.3.3d ANGFINEMOTORTRANSFERAGEL And age? (Age first performed activity)
5b.3.4a ANGFINEMOTORPENCILABILITYL Hold a pencil and scribble 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.3.4b ANGFINEMOTORPENCILABILITYDK Or, don't know
5b.3.4c ANGFINEMOTORPENCILFREQL And frequency
5b.3.4d ANGFINEMOTORPENCILAGEL And age? (Age first performed activity)
5b.3.5a ANGFINEMOTORDRAWABILITYL Hold a pencil and draw 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.3.5b ANGFINEMOTORDRAWABILITYDK Or, don't know
5b.3.5c ANGFINEMOTORDRAWFREQL And frequency
5b.3.5d ANGFINEMOTORDRAWAGEL And age? (Age first performed activity)
5b.3.6a ANGFINEMOTORLARGEBALLABILITYL Catch a large ball 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.3.6b ANGFINEMOTORLARGEBALLABILITYDK Or, don't know
5b.3.6c ANGFINEMOTORLARGEBALLFREQL And frequency
5b.3.6d ANGFINEMOTORLARGEBALLAGEL And age? (Age first performed activity)
5b.3.7a ANGFINEMOTORSMALLABILITYL Catch a small ball 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5b.3.7b ANGFINEMOTORSMALLABILITYDK Or, don't know
5b.3.7c ANGFINEMOTORSMALLFREQL And frequency
5b.3.7d ANGFINEMOTORSMALLAGEL And age? (Age first performed activity)
5b.4 Other comments (ANGMOTORCOMMENTSec)
No Code Question Response
5b.4.1 ANGMOTORCOMMENT Any other comments about your child/ adult’s motor function?
5c.1. Adaptive Skills – Dressing - please describe your child/adult's ability to do the following: (ANGADAPTBEHDRESS)
No Code Question Response
5c.1.1a ANGDRESSPUTUPHANDSABILITYL Put up their hands to help dress 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.1b ANGDRESSPUTUPHANDSABILITYDK Or, don't know
5c.1.1c ANGDRESSPUTUPHANDSFREQL And frequency
5c.1.1d ANGDRESSPUTUPHANDSAGEL And age? (Age first performed activity)
5c.1.2a ANGDRESSREMOVESIMPLEABILITYL Take off simple clothes such as socks 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.2b ANGDRESSREMOVESIMPLEABILITYDK Or, don't know
5c.1.2c ANGDRESSREMOVESIMPLEFREQL And frequency
5c.1.2d ANGDRESSREMOVESIMPLEAGEL And age? (Age first performed activity)
5c.1.3a ANGDRESSREMOVECOMPLEXABILITYL Take off complex clothes such as shirts 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.3b ANGDRESSREMOVECOMPLEXABILITYDK Or, don't know
5c.1.3c ANGDRESSREMOVECOMPLEXFREQL And frequency
5c.1.3d ANGDRESSREMOVECOMPLEXAGEL And age? (Age first performed activity)
5c.1.4a ANGFINEMOTORVELCROABILITYL Do up velcro 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.4b ANGFINEMOTORVELCROABILITYDK Or, don't know
5c.1.4c ANGFINEMOTORVELCROFREQL And frequency
5c.1.4d ANGFINEMOTORVELCROAGEL And age? (Age first performed activity)
5c.1.5a ANGFINEMOTORBUTTONABILITYL Do up buttons or zippers 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.5b ANGFINEMOTORBUTTONABILITYDK Or, don't know
5c.1.5c ANGFINEMOTORBUTTONFREQL And frequency
5c.1.5d ANGFINEMOTORBUTTONAGEL And age? (Age first performed activity)
5c.1.6a ANGDRESSSELFERRORABILITYL Dress themselves, even if not always right (eg buttons not lined up, clothes back to front) 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.6b ANGDRESSSELFERRORABILITYDK Or, don't know
5c.1.6c ANGDRESSSELFERRORFREQL And frequency
5c.1.6d ANGDRESSSELFERRORAGEL And age? (Age first performed activity)
5c.1.7a ANGDRESSSELFOKABILITYL Dress themselves without assistance 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.7b ANGDRESSSELFOKABILITYDK Or, don't know
5c.1.7c ANGDRESSSELFOKFREQL And frequency
5c.1.7d ANGDRESSSELFOKAGEL And age? (Age first performed activity)
5c.1.8a ANGDRESSAPPRPRIATEABILITYL Chooses clothes appropriately (eg warm clothes if cold) 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.1.8b ANGDRESSAPPRPRIATEABILITYDK Or, don't know
5c.1.8c ANGDRESSAPPRPRIATEFREQL And frequency
5c.1.8d ANGDRESSAPPRPRIATEAGEL And age? (Age first performed activity)
5c.2. Adaptive Skills – Toileting and Continence - please describe your child/adult's ability to do the following: (ANGADAPTBEHTOILETING)
No Code Question Response
5c.2.1a ANGTOILETCONTINENTABILITYL Is continent (toilet trained) 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.2.1b ANGTOILETCONTINENTABILITYDK Or, don't know
5c.2.1c ANGTOILETCONTINENTFREQL And frequency
5c.2.1d ANGTOILETCONTINENTAGEL And age? (Age first performed activity
5c.2.2a ANGTOILETBEHABILITYL Showed indications of toileting behaviours 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.2.2b ANGTOILETBEHABILITYDK Or, don't know
5c.2.2c ANGTOILETBEHFREQL And frequency
5c.2.2d ANGTOILETBEHAGEL And age? (Age first performed activity
5c.2.3a ANGTOILETTIMEDABILITYL Timed to go to the toilet (eg taken to the toilet every 3 hours) 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.2.3b ANGTOILETTIMEDABILITYDK Or, don't know
5c.2.3c ANGTOILETTIMEDFREQL And frequency
5c.2.3d ANGTOILETTIMEDAGEL And age? (Age first performed activity
5c.2.4a ANGTOILETINDICATEABILITYL Indicates when they want to go to the toilet 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.2.4b ANGTOILETINDICATEABILITYDK Or, don't know
5c.2.4c ANGTOILETINDICATEFREQL And frequency
5c.2.4d ANGTOILETINDICATEAGEL And age? (Age first performed activity
5c.2.5a ANGTOILETSTOOLSABILITYL Continent of stools (bowel movements) 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.2.5b ANGTOILETSTOOLSABILITYDK Or, don't know
5c.2.5c ANGTOILETSTOOLSFREQL And frequency
5c.2.5d ANGTOILETSTOOLSAGEL And age? (Age first performed activity
5c.2.6a ANGTOILETURINEDAYABILITYL Continent of urine (dry) during the day 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.2.6b ANGTOILETURINEDAYABILITYDK Or, don't know
5c.2.6c ANGTOILETURINEDAYFREQL And frequency
5c.2.6d ANGTOILETURINEDAYAGEL And age? (Age first performed activity
5c.2.7a ANGTOILETURINENIGHTABILITYL Continent of urine (dry) at night 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.2.7b ANGTOILETURINENIGHTABILITYDK Or, don't know
5c.2.7c ANGTOILETURINENIGHTFREQL And frequency
5c.2.7d ANGTOILETURINENIGHTAGEL And age? (Age first performed activity
5c. 3. Adaptive Behaviour: Eating - please describe your child/adult's ability to do the following: (ANGBEHDEVEATING2L)
No Code Question Response
5c.3.1a ANGBEHDEVDONTLIKE Are there textures or tastes he/she really doesn’t like? 1 - Yes; 2 – No; 3 - Unknown
5c.3.1b ANGBEHDEVDONTLIKEWHAT2 Please give examples. 1 – Meat or fish; 2 – Fruit or vegetables 3 – Rice, pasta or bread 4 – Beans; 5 – Thick textures or pastes; 6 – Crunchy textures; 7 – Eggs; 8 – Hard textures; 9 – Soft textures; 10 – Crispy textures; 11 – Hot foods; 12 – Cold foods; 13 – Salty or savory foods; 14 – Sweet foods; 15 – Sour foods; 16 – Spicy foods; 17 – Dry textures; 18 – Wet textures; 19 – Solid foods; 20 – Chewy textures; 21 – Other
5c.31c ANGBEHDEVDONTLIKEWHAT If yes, please give examples
5c.3.2a ANGEATINGFUSSYFREQL Fussy with their food -  frequency
5c.3.2b ANGEATINGFUSSYAGEL And age? (Age first performed activity
5c.3.3a ANGFINEMOTORBOTTLEABILITYL Hold a bottle 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.3b ANGFINEMOTORBOTTLEABILITYDK Or, don't know
5c.3.3c ANGFINEMOTORBOTTLEFREQL And frequency
5c.3.3d ANGFINEMOTORBOTTLEAGEL And age? (Age first performed activity
5c.3.4a ANGEATINGTEXTUREABILITYL Chew all textures 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.4b ANGEATINGTEXTUREABILITYDK Or, don't know
5c.3.4c ANGEATINGTEXTUREAGEL And age? (Age first performed activity
5c.3.5a ANGFINEMOTORFEEDABILITYL Finger feed 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.5b ANGFINEMOTORFEEDABILITYDK Or, don't know
5c.3.5c ANGFINEMOTORFEEDFREQL And frequency
5c.3.5d ANGFINEMOTORFEEDAGEL And age? (Age first performed activity
5c.3.6a ANGFINEMOTORSPOONABILITYL Hold a spoon and feed 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.6b ANGFINEMOTORSPOONABILITYDK Or, don't know
5c.3.6c ANGFINEMOTORSPOONFREQL And frequency
5c.3.6d ANGFINEMOTORSPOONAGEL And age? (Age first performed activity
5c.3.7a ANGFINEMOTORFORKABILITYL Use a fork 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.7b ANGFINEMOTORFORKABILITYDK Or, don't know
5c.3.7c ANGFINEMOTORFORKFREQL And frequency
5c.3.7d ANGFINEMOTORFORKAGEL And age? (Age first performed activity
5c.3.8a ANGEATINGFEEDSELFABILITYL Feed self using fingers or utensils 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.8b ANGEATINGFEEDSELFABILITYDK Or, don't know
5c.3.8c ANGEATINGFEEDSELFFREQL And frequency
5c.3.8d ANGEATINGFEEDSELFAGEL And age? (Age first performed activity
5c.3.9a ANGFINEMOTORHOLDCUPABILTYL Hold a cup or tumbler and drink 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.9b ANGFINEMOTORHOLDCUPABILTYDK Or, don't know
5c.3.9c ANGFINEMOTORHOLDCUPFREQL And frequency
5c.3.9d ANGFINEMOTORHOLDCUPAGEL And age? (Age first performed activity
5c.3.10a ANGEATINGFEEDSUPPORTFREQL Need support with feeding from a parent/caregiver - frequency 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.10b ANGEATINGFEEDSUPPORTAGEL And age? (Age first performed activity
5c.3.11a ANGEATINGFULLABILITYL Indicates that they are full 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.11b ANGEATINGFULLABILITYDK Or, don't know
5c.3.11c ANGEATINGFULLFREQL And frequency
5c.3.11d ANGEATINGFULLAGEL And age? (Age first performed activity
5c.3.12a ANGEATINGSUPPLEMENTFREQL Use supplementation in the form of additional formulas - frequency 1 – No difficulty; 2 – Mild difficulty; 3 – Moderate difficulty; 4 – Severe difficulty; 5 – Unable to perform activity; 6 – Unknown
5c.3.12b ANGEATINGSUPPLEMENTAGEL And age?
5c.4 Other comments (ANGADAPTCOMMENTSec)
No Code Question Response
5c.4.1 ANGADAPTCOMMENT Any other comments about your child/ adult’s dressing, toileting or eating?
5d.1 Activities (ANGBEHDEVACTIVITIES)
No Code Question Response
5d.1.1a ANGBEHDEVPREFACT What are your child/ adult’s preferred activities? (Check all that apply) 1 – Socialising 2 – Being with familiar people 3 – Playing social games such as peek a boo or hide and seek 4 – Watching TV 5 – Using technology and games, e.g. iPads 6 – Swimming – Being outside; 8 – Music or dancing; 9 – Playing with toys; 10 – Riding a bike or scooter; 11 – Riding in a car/ travelling; 12 – Eating/ mealtimes; 13 – Bathing; 14 – Playing on play equipment; 15 – Other
51.1b ANGBEHDEVACTOTH If other, Please state
5d.2 Behavioural (ANGBEHDEVBEHAVIOURAL)
No Code Question Response
5d.2.1 ANGBEHDEVGOODBEH2 How problematic do you see your child/ adult’s behaviour on a scale of 1 to 10 in comparison to age matched typical peers? Scale 1-10 (1 - No problems to 10 - Major problems)
5d.3 Do they exhibit any of the following behaviours? l (ANGBEHDEVBEHAVIOURAL2)
No Code Question Response
5d.3.1a ANGBEHDEVREPETL Repetitive behaviours such as slapping the wall
5d.3.1b ANGBEHDEVREPETDK Or, don't know
5d.3.2a ANGBEHDEVFOCALL Unusual movements that are repetitive: Focal hand movements
5d.3.2b ANGBEHDEVFOCALDK Or, don't know
5d.3.3a ANGBEHDEVWHOLEBODYL Whole body movements
5d.3.3b ANGBEHDEVWHOLEBODYDK Or, don't know
5d.3.4a ANGBEHDEVMOUTHL Mouthing or chewing
5d.3.4b ANGBEHDEVMOUTHDK Or, don't know
5d.3.5a ANGBEHDEVAGITATIONNEWL Do they exhibit any of the following behaviours? Agitation in new situations
5d.3.5b ANGBEHDEVAGITATIONNEWDK Or, don't know
5d.3.6a ANGBEHDEVFEARSTRANGERL Fear of strangers
5d.3.6b ANGBEHDEVFEARSTRANGERDK Or, don't know
5d.3.7a ANGBEHDEVSOCIALL Will socialise with anyone
5d.3.7b ANGBEHDEVSOCIALDK Or, don't know
5d.3.8a ANGBEHDEVFEARNEWL Fear of new situations
5d.3.8b ANGBEHDEVFEARNEWDK Or, don't know
5d.3.9a ANGBEHDEVANXIOUSL Anxious behaviours
5d.3.9b ANGBEHDEVANXIOUSDK Or, don't know
5d.3.9c ANGBEHDEVANXIOUSWHEN When do they show these behaviours 1 – New situations or people; 2 - Overstimulating settings (e.g. loud noise or crowds) ; 3 - Separation from parent/ caregiver ; 4 - Medical settings or tests; 5 - Having to wait; 6 - When ill or injured; 7 - When hungry or thirsty ; 8 - When unable to communicate; 9 – Other (Range/ DefaultWidget; AnxiousBeh)
5d.3.9d ANGBEHDEVANXIOUSWHAT2 What anxious behaviours 1 – Crying; 2 - Repetitive movements or laughter; 3 - Aggression (e.g. hitting, grabbing or hair pulling); 4 - Self harm (e.g biting own hand); 5 - Yelling or other vocalisations; 6 - Gagging or vomiting; 7 - Clinging to caregiver; 8 - Mouthing or chewing objects; 9 – Avoidance (e.g. drop to floor); 1 0 - Escape (e.g. running away); 11 - Other
5.56.11 ANGBEHDEVANXIOUSWHAT If yes to anxious behaviours, what?
5d.3.10a ANGBEHDEVOPPOSITIONALL Oppositional behaviours, e.g. refusing to do something
5d.3.10b ANGBEHDEVOPPOSITIONALDK Or, don't know
5d.3.11a ANGBEHDEVBITINGL Aggressive behaviours: biting
5d.3.11b ANGBEHDEVBITINGDK Or, don't know
5d.3.12a ANGBEHDEVHAIRPULLINGL Hair pulling
5d.3.12b ANGBEHDEVHAIRPULLINGDK Or, don't know
5d.3.13a ANGBEHDEVHITTINGL Hitting
5d.3.13b ANGBEHDEVHITTINGDK Or, don't know
5d.3.14a ANGBEHDEVGRABBINGL Grabbing
5d.3.14b ANGBEHDEVGRABBINGDK Or, don't know
5d.3.15a ANGBEHDEVHYPERACTIVITYL Hyperactivity
5d.3.15b ANGBEHDEVHYPERACTIVITYDK Or, don't know
5d.3.16a ANGBEHDEVPOORATTENTIONL Poor attention
5d.3.16b ANGBEHDEVPOORATTENTIONDK Or, don't know
5d.3.17a ANGBEHDEVGOODCONCENTRATIONL Good concentration on things he/she enjoys such as iPad games
5d.3.17b ANGBEHDEVGOODCONCENTRATIONDK Or, don't know
5d.3.18a ANGBEHDEVWATERL Fascination with water
5d.3.18b ANGBEHDEVWATERDK Or, don't know
5d.3.19a ANGBEHDEVIMPULSIVITYL Impulsivity – such as running out on road/hitting out
5d.3.19b ANGBEHDEVIMPULSIVITYDK Or, don't know
5d.3.20a ANGBEHDEVSMILINGNOTHINGL Frequent smiling at nothing in particular
5d.3.20b ANGBEHDEVSMILINGNOTHINGDK Or, don't know
5d.3.21a ANGBEHDEVSMILINGL Frequent appropriate smiling
5d.3.21b ANGBEHDEVSMILINGDK Or, don't know
5d.3.22a ANGBEHDEVSPONTLAUGHTERL Spontaneous laughter at nothing in particular
5d.3.22b ANGBEHDEVSPONTLAUGHTERDK Or, don't know
5d.3.23a ANGBEHDEVNIGHTLAUGHTERL Night time laughter
5d.3.23b ANGBEHDEVNIGHTLAUGHTERDK Or, don't know
5d.3.24a ANGBEHDEVAPPROPRIATELAUGHTERL Appropriate laughter
5d.3.24b ANGBEHDEVAPPROPRIATELAUGHTERDK Or, don't know
5d.3.25a ANGBEHDEVSEPANXIETYL Separation anxiety
5d.3.25b ANGBEHDEVSEPANXIETYDK Or, don't know
5d.3.26a ANGBEHDEVFEARLEFTL Fear of being left at school or in care situations
5d.3.26b ANGBEHDEVFEARLEFTDK Or, don't know
5d.3.27a ANGBEHDEVSKINPICKINGL Do they exhibit self harming behaviour: Skin picking
5d.3.27b ANGBEHDEVSKINPICKINGDK Or, don't know
5d.3.28a ANGBEHDEVHEADBANGINGL Head banging
5d.3.28b ANGBEHDEVHEADBANGINGDK Or, don't know
5d.3.29a ANGBEHDEVSELFHITTINGL Self hitting
5d.3.29b ANGBEHDEVSELFHITTINGDK Or, don't know
5d.4 Other comments (ANGBEHAVCOMMENTSec)
No Code Question Response
5d.4.1 ANGBEHAVCOMMENT Any other comments about your child/ adult’s behaviour?
Read more
Clinics/ Diagnostic Tests, Epilepsy/ Seizure, Hospitalisations, Illness, Medication
Module 6
Module 6 – Epilepsy
Seizure status, seizure types and EEG files 6.0 Seizure History (ANGSeizureTypes) No Code Question Response 6.0.0 ANGEpilepsyEver2 Has your child/ adult ever experienced any seizures? 1 – Yes; 2 – No 6.0.1 SeizureStatus What is their  current seizure status? Please report on your child/ adult’s current seizure status 1 – Controlled without medication; 2 – […]
Seizure status, seizure types and EEG files
6.0 Seizure History (ANGSeizureTypes)
No Code Question Response
6.0.0 ANGEpilepsyEver2 Has your child/ adult ever experienced any seizures? 1 – Yes; 2 - No
6.0.1 SeizureStatus What is their  current seizure status? Please report on your child/ adult's current seizure status 1 – Controlled without medication; 2 - Controlled with medication; 3 - Controlled with diet; 4 - Mostly controlled with occasional breakthroughs; 5 - Uncontrolled with medication; 6 - Uncontrolled without medication; 7 – Unknown
6.0.2 ANGSeizureBreakthrough What do you feel is the source of breakthrough seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.0.3 ANGSeizureAgeFirst What age was the first observed seizure activity?
6.0.4 ANGSeizureType What type of seizure was it? 1 - Absence Seizures , 2 -Myoclonic seizures, 3 - Atonic Seizures , 4 -  Tonic, Clonic and Tonic-Clonic  Seizures 5 - Unknown/unaware of type
6.0.5 ANGSeizureFirstTrigger What do you think triggered the seizure? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.0.6 ANGSeizureMedication Was medication given? Yes – please report in the medications and interventions module, No –
6.0.7 ANGSeizureHospitalisation Was hospitalisation required? Yes – please report in the medical history and hospitalisations module, No –
6.0.8 ANGSeizureMedicationOngoing Was ongoing medication prescribed at this stage? Yes – please report in the medications and interventions module, No –
6.1 Has your child/ adult ever had any of the following seizure types? (ANGSeizureTypes)
No Code Question Response
6.1.1 ANGAtonicTypeYNU Atonic Seizures? 1 – Yes; 2 – No; 3 - Unknown
6.1.2 ANGAtonicOnset Age of onset
6.1.3 ANGAtonicTypeStatus Is your child/ adult currently free from atonic seizures? 1 – Yes; 2 – No
6.1.4 ANGAtonicTypeRecur Has your child/ adult experienced freedom or recurrences of atonic seizures in the past? 1 – Yes; 2 – No
6.1.5 ANGAtonicTypeDescribe
6.1.6 ANGSeizureFrequencyAAtonic How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.7 ANGSeizureFrequencyBAtonic How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4 – 20-50; 5 – More than 50
6.1.8 ANGAtonicTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.9 ANGAtonicTriggerOTH Please specify
6.1.10 ANGAtonicMedication Ever been medicated for atonic seizures? Yes – please report in the medications and interventions module, No –
6.1.11 ANGAtonicHospitalisation Ever been hospitalised for atonic seizures? Yes – please report in the medical history and hospitalisations module, No –
6.1.12 ANGAtonicComment Please comment on any other details about their atonic seizures (eg significant seizure events/ changes)
6.1.13 ANGTonicClonicTypeYNU Tonic, Clonic or Tonic-Clonic seizures?? 1 – Yes; 2 – No; 3 - Unknown
6.1.14 ANGTonicClonicTypeFG Was it focal or generalised? 1 – Focal; 2 – Generalised; 3 - Unknown
6.1.16 ANGTonicClonicTypeStatus Has your child/ adult experienced freedom or recurrences of Tonic, Clonic or Tonic-Clonic seizures in the past? 1 – Yes; 2 – No
6.1.17 ANGTonicClonicTypeTypeRecur Please describe
6.1.18 ANGTonicClonicTypeDescribe How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.19 SeizureFrequencyATonicClonic How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.20 SeizureFrequencyBTonicClonic What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.21 ANGTonicClonicTrigger Please specify
6.1.22 ANGTonicClonicTriggerOTH Ever been medicated for Tonic, Clonic or Tonic-Clonic seizures? Yes – please report in the medications and interventions module, No –
6.1.23 ANGTonicClonicMedication Ever been hospitalised for Tonic, Clonic or Tonic-Clonic seizures? Yes – please report in the medical history and hospitalisations module, No–
6.1.24 ANGTonicClonicHospitalisation Please comment on any other details about their Tonic, Clonic or Tonic-Clonic seizures (eg significant seizure events/ changes)
6.1.25 ANGTonicClonicComment Please comment on any other details about their Tonic, Clonic or Tonic-Clonic seizures (eg significant seizure events/ changes)
6.1.26 ANGMyoclonicTypeYNU Myoclonic seizures? 1 – Yes; 2 – No; 3 - Unknown
6.1.27 ANGMyoclonicOnset Age of onset
6.1.28 ANGMyoclonicTypeStatus Is your child/ adult currently free from Myoclonic seizures seizures? 1 – Yes; 2 – No
6.1.29 ANGMyoclonicTypeRecur Has your child/ adult experienced freedom or recurrences of Myoclonic seizures in the past? 1 – Yes; 2 – No
6.1.30 ANGMyoclonicTypeDescribe Please describe
6.1.31 SeizureFrequencyAMyoclonic How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.32 SeizureFrequencyBMyoclonic How many seizures do they typically have in this time frame? 1 – Less than 5; 2 –  5-10; 3 – 10-20; 4 – 20-50; 5 – More than 50
6.1.33 ANGMyoclonicTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.34 ANGMyoclonicTriggerOTH Please specify
6.1.35 ANGMyoclonicMedication Ever been medicated for Myoclonic seizures? Yes – please report in the medications and interventions module, No –
6.1.36 ANGMyoclonicHospitalisation Ever been hospitalised for Myoclonic seizures? Yes – please report in the medical history and hospitalisations module, No –
6.1.37 ANGMyoclonicComment Please comment on any other details about their Myoclonic seizures (eg significant seizure events/ changes)
6.1.38 ANGClusterMotorTypeYNU Cluster motor seizures? 1 – Yes; 2 – No; 3 - Unknown
6.1.39 ANGClusterMotorTypeOnset Age of onset
6.1.40 ANGClusterMotorTypeStatus Is your child/ adult currently free from Cluster motor seizures? 1 – Yes; 2 – No
6.1.41 ANGClusterMotorTypeRecur Has your child/ adult experienced freedom or recurrences of Cluster motor seizures in the past? 1 – Yes; 2 – No
6.1.42 ANGClusterMotorTypeDescribe Please describe
6.1.43 SeizureFrequencyAClusterMotor How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.44 SeizureFrequencyBClusterMotor How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.45 ClusterMotorTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.46 ClusterMotorTriggerOTH Please specify
6.1.47 ClusterMotorMedication Ever been medicated for Cluster motor seizures? Yes – please report in the medications and interventions module, No
6.1.48 ClusterMotorHospitalisation Ever been hospitalised for Cluster motor seizures? Yes – please report in the medical history and hospitalisations module, No –
6.1.49 ClusterMotorComment Please comment on any other details about their Cluster motor seizures (eg significant seizure events/ changes)
6.1.50 ANGAbsenceTypeYNU Absence seizures? 1 – Yes; 2 – No; 3 - Unknown
6.1.51 ANGAbsenceTypeOnset Age of onset
6.1.52 ANGAbsenceTypeStatus Is your child/ adult currently free from Absence seizures? 1 – Yes; 2 – No
6.1.53 ANGAbsenceTypeRecur Has your child/ adult experienced freedom or recurrences of Absence seizures in the past? 1 – Yes; 2 – No
6.1.54 ANGAbsenceTypeDescribe Please describe
6.1.55 SeizureFrequencyAAbsence How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.56 SeizureFrequencyBAbsence How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.57 ANGAbsenceTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.58 ANGAbsenceTriggerOTH Please specify
6.1.59 ANGAbsenceMedication Ever been medicated for Absence seizures? Yes – please report in the medications and interventions module, No–
6.1.60 ANGAbsenceHospitalisation Ever been hospitalised for Absence seizures? Yes – please report in the medical history and hospitalisations module, No –
6.1.61 ANGAbsenceComment Please comment on any other details about their Absence seizures (eg significant seizure events/ changes)
6.1.62 ANGClusterNonMotorType Cluster non-motor seizures? 1 – Yes; 2 – No; 3 - Unknown
6.1.63 ANGClusterNonMotorTypeOnset Age of onset
6.1.64 ANGClusterNonMotorTypeStatus Is your child/ adult currently free from Cluster non-motor seizures? 1 – Yes; 2 – No
6.1.65 ANGClusterNonMotorTypeRecur Has your child/ adult experienced freedom or recurrences of Cluster non-motor seizures in the past? 1 – Yes; 2 – No
6.1.66 ANGClusterNonMotorTypeDescribe Please describe
6.1.67 SeizureFreqAClusterNonMotor How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.68 SeizureFreqBClusterNonMotor How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.69 ClusterNonMotorTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.70 ClusterNonMotorTriggerOTH Please specify
6.1.71 ClusterNonMotorMedication Ever been medicated for Cluster non-motor seizures? Yes – please report in the medications and interventions module, No –
6.1.72 ClusterNonMotorHospitalisation Ever been hospitalised for Cluster non-motor seizures? Yes – please report in the medical history and hospitalisations module, No –
6.1.73 ClusterNonMotorComment Please comment on any other details about their Cluster non-motor seizures (eg significant seizure events/ changes)
6.1.74 ANGSpasmTypeYNU Epileptic spasms? 1 – Yes; 2 – No; 3 - Unknown
6.1.75 ANGSpasmTypeOnset Age of onset
6.1.76 ANGSpasmTypeStatus Is your child/ adult currently free from epileptic spasms? 1 – Yes; 2 – No
6.1.77 ANGSpasmTypeRecur Has your child/ adult experienced freedom or recurrences of epileptic spasms in the past? 1 – Yes; 2 – No
6.1.78 ANGSpasmTypeDescribe Please describe
6.1.79 SeizureFreqASpasm How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.80 SeizureFreqBSpasm How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.81 SpasmTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.82 SpasmTriggerOTH Please specify
6.1.83 SpasmMedication Ever been medicated for epileptic spasms? Yes – please report in the medications and interventions module, No –
6.1.84 SpasmHospitalisation Ever been hospitalised for epileptic spasms? Yes – please report in the medical history and hospitalisations module, No –
6.1.85 SpasmComment Please comment on any other details about their epileptic spasms? (eg significant seizure events/ changes)
6.1.86 ConvulsiveStatusTypeYNU Convulsive status epilepticus? 1 – Yes; 2 – No; 3 - Unknown
6.1.87 ANGConvulsiveStatusTypeFG Was it focal or generalised? 1 – Focal; 2 – Generalised; 3 - Unknown
6.1.88 ConvulsiveStatusTypeOnset Age of onset
6.1.89 ANGConvulsiveStatusTypeStatus Is your child/ adult currently free from Convulsive status epilepticus?? 1 – Yes; 2 – No
6.1.90 ANGConvulsiveStatusTypeRecur Has your child/ adult experienced freedom or recurrences of Convulsive status epilepticus in the past? 1 – Yes; 2 – No
6.1.91 ConvulsiveStatusTypeDescribe Please describe
6.1.92 SeizureFreqAConvulsiveStatus How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.93 SeizureFreqBConvulsiveStatus How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.94 ConvulsiveTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.95 ConvulsiveTriggerOTH Please specify
6.1.96 ConvulsiveMedication Ever been medicated for Convulsive status epilepticus?? Yes – please report in the medical history and hospitalisations module, No –
6.1.97 ConvulsiveHospitalisation Ever been hospitalised for Convulsive status epilepticus?? Yes – please report in the medical history and hospitalisations module, No –
6.1.98 ConvulsiveComment Please comment on any other details about their Convulsive status epilepticus? (eg significant seizure events/ changes)
6.1.99 NonConvulsiveStatusTypeYNU Non-convulsive status epilepticus? 1 – Yes; 2 – No; 3 - Unknown
6.1.100 NonConvulsiveStatusTypeOnset Age of onset
6.1.101 ANGNonConvulsiveStatTypeStatus Is your child/ adult currently free from Non-convulsive status epilepticus? 1 – Yes; 2 – No
6.1.102 NonConvulsiveStatusTypeRecur Has your child/ adult experienced freedom or recurrences of Non-convulsive status epilepticus in the past? 1 – Yes; 2 – No
6.1.103 NonConvulsiveStatusDescribe Please describe
6.1.104 SeizureFreqANonConvulsiveStat How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.105 SeizureFreqBNonConvulsiveStat How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.106 NonConvulsiveTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.107 NonConvulsiveTriggerOTH Please specify
6.1.108 NonConvulsiveStatMedication Ever been medicated for Non-convulsive status epilepticus? Yes – please report in the medical history and hospitalisations module, No –
6.1.109 NonConvulsiveStatHosp Ever been hospitalised for Non-convulsive status epilepticus? Yes – please report in the medical history and hospitalisations module, No –
6.1.110 NonConvulsiveStatComment Please comment on any other details about their Non-convulsive status epilepticus (eg significant seizure events/ changes)
6.1.111 UnknownTypeYNU Unknown/ unaware? 1 – Yes; 2 – No; 3 - Unknown
6.1.112 ANGUnknownTypeOnset Age of onset
6.1.113 ANGUnknownTypeStatus Is your child/ adult currently free from unknown/ unaware? 1 – Yes; 2 – No
6.1.114 ANGUnknownTypeRecur Has your child/ adult experienced freedom or recurrences of unknown/ unaware in the past? 1 – Yes; 2 – No
6.1.115 ANGUnknownTypeDescribe Please describe
6.1.116 ANGSeizureFrequencyAUnknown How often do/did seizures occur? 1- Daily; 2- Weekly; 3– Monthly; 4 – Yearly; 5 – Rarely (less than once a year)
6.1.117 ANGSeizureFrequencyBUnknown How many seizures do they typically have in this time frame? 1– Less than 5; 2 – 5-10; 3 – 10-20; 4– 20-50; 5 – More than 50
6.1.118 ANGUnknownTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever; 2 - Illness/infection with fever; 3 - Co-medication/drug interaction; 4 - Tiredness/ fatigue; 5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement; 6 - Hot weather, overheating or dehydration; 7 – Hormonal; 8 – Other; 9 - Unknown
6.1.119 ANGUnknownTriggerOTH Please specify
6.1.120 ANGUnknownMedication Ever been medicated for unknown/ unaware? Yes – please report in the medical history and hospitalisations module, No –
6.1.121 ANGUnknownHospitalisation Ever been hospitalised for unknown/ unawaye seizures? Yes – please report in the medical history and hospitalisations module, No –
6.1.122 ANGUnknownComment Please comment on any other details about their unknown/ unaware seizures (eg significant seizure events/ changes)
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Behaviour, Communication, Epilepsy/ Seizure, Illness, Medication, Sleep, Speech, Therapy/ Therapies
Module 7
Module 7 – Medications, Interventions and Therapies
This module is completed when entering the patient registry and updated as required, the six month module prompts updates as well. Information is collected on medications used and ceased as well as therapy services such as speech, physio and occupational therapies. 7.1a Medications/ Interventions and Therapy Use (MedIntScreen) No Code Question Response 7.1.1a curmedscreen Is […]
This module is completed when entering the patient registry and updated as required, the six month module prompts updates as well. Information is collected on medications used and ceased as well as therapy services such as speech, physio and occupational therapies.
7.1a Medications/ Interventions and Therapy Use (MedIntScreen)
No Code Question Response
7.1.1a curmedscreen Is your child/ adult currently taking any medications/ interventions? 1 – Yes; 2 – No; 3 – Unknown
7.1.2a stopmedscreen Has your child/ adult tried any medications/ interventions that they are no longer using? 1 – Yes; 2 – No; 3 – Unknown
7.1.3a therapyscreen Has your child/ adult ever taken part in any therapies? 1 – Yes; 2 – No; 3 – Unknown
7.2 Current medications/interventions (ANGMedIntCurrent)
No Code Question Response
7.2.1 ANGMedIntWhat Please tell us what medications/interventions your child/ adult is currently taking 1 – Cabamazepine 2 – Clobazam 3 – Clonozepam 4 – Ethosuximide 5 – Folate 6 – Lamotrigine 7 – Levetiracetam 8 – Oxcarbazepine 9 – Phenobarbintone aspen 10 – Sodium valproate 11 – Topiramate 12 – Aripiprazole 13 – Methylphenidate 14 – Risperidone 15– Efalex 16 – Evening primrose oil 17 – Amitriptyline 18 – Diazepam 19– Melatonin 20 – Midazolam 21 – Nitrazepam 22 – Phenobarbital 23 – Promethazine 24 – Trimeprazine tartrate 25 – Lactulose 26 – Ommeprazole 27 – Ondansetron 28 – Macrogol 29 -  Probiotic 30 - Psyllium 31 – Baclofen 32 – Benzatropine 33 – Calcium 34 – Celepram 35 – Cephalexin 36 – Clonidine 37 – Cyproheptadine 38 – Fluticasone 39 – Hexamine hipp 40 – Minocycline 41 – Mometasone 42 – Montelukast 43 – Netformin 44 – Oxybutynin 45 – Pantoprazole 46 - Miralax /polyethylene glycol 47 – Lactulose 48 – Dulcolax/Bisacodyl 49 – Benefiber/Metamucil or other fiber laxative 50 – Cannabis or cannabinoid 51 – Ketogenic diet 52 – LGIT diet 53 – Other diet 54 – Vagus Nerve Stimulation(VNS)
7.2.2 ANGMedIntNameOTH If medication is not listed above, please state
7.2.3 ANGMedIntReason What is the reason for using this drug/intervention? Check all that apply 1 – Anti epileptic; 2 – Behavioural; 3 – Sleep; 4 – Gastrointestinal; 5 – Complimentary; 6 – Diet; 7 – Vagus nerve stimulation; 8 - Other
7.2.3a ANGMedIntReasonOth Other reason
7.2.4a ANGMedIntAgeStarted2 What was your child/ adult's age when medication/ intervention was started?
7.2.7a AngMedIntOften2 How often is this medication given? 1 - Once a day; 2 - Twice a day; 3 - 3 times a day; 4 - 4 times a day; 5 - 5 times a day; 6 - 6 times a day; 7 - As needed; 8 - Other
7.2.7ai ANGDoseSame Is the same dose given each time? Yes/ No
7.2.6a ANGDose2 Dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnit Dosage unit. Please indicate the dosage unit 1 - Grams ; 2 – Milligrams ; 3 - Micrograms ; 4 - Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 - Other
7.2.6c ANGDoseUnitOth Please specify If other, please specify
7.2.8a ANGMedIntStrength2 Strength or concentration
7.2.8b ANGStrengthUnit Strength Unit Please indicate the strength/ concentration unit 1 - Grams ; 2 – Milligrams ; 3 - Micrograms ; 4 - Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 - Other
7.2.8c ANGStrengthUnitOth Please specify  If other, please specify
7.2.7b AngMedIntOftenT1 Medication time 1 Please indicate what time this medication/ intervention is given
7.2.6a ANGDose2T1 Time 1 dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnitT1 Time 1 dosage unit. Please indicate the dosage unit 1 – Grams ; 2 – Milligrams ; 3 – Micrograms ; 4 – Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 – Other
7.2.6c ANGDoseUnitOthT1 Please specify If other, please specify
7.2.7c AngMedIntOftenT2 Medication time 2 Please indicate what time this medication/ intervention is given
7.2.6a ANGDose2T2 Time 2 dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnitT2 Time 2 dosage unit. Please indicate the dosage unit 1 – Grams ; 2 – Milligrams ; 3 – Micrograms ; 4 – Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 – Other
7.2.6c ANGDoseUnitOthT2 Please specify If other, please specify
7.2.7d AngMedIntOftenT3 Medication time 3 Please indicate what time this medication/ intervention is given
7.2.6a ANGDose2T3 Time 3 dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnitT3 Time 3 dosage unit. Please indicate the dosage unit 1 - Grams ; 2 – Milligrams ; 3 - Micrograms ; 4 - Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 - Other
7.2.6c ANGDoseUnitOthT3 Please specify If other, please specify
7.2.7e AngMedIntOftenT4 Medication time 4 Please indicate what time this medication/ intervention is given
7.2.6a ANGDose2T4 Time 4 dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnitT4 Time 4 dosage unit. Please indicate the dosage unit 1 - Grams ; 2 – Milligrams ; 3 - Micrograms ; 4 - Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 - Other
7.2.6c ANGDoseUnitOthT4 Please specify If other, please specify
7.2.7f AngMedIntOftenT5 Medication time 5 Please indicate what time this medication/ intervention is given
7.2.6a ANGDose2T5 Time 5 dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnitT5 Time 5 dosage unit. Please indicate the dosage unit 1 - Grams ; 2 – Milligrams ; 3 - Micrograms ; 4 - Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 - Other
7.2.6c ANGDoseUnitOthT5 Please specify If other, please specify
7.2.7g AngMedIntOftenT6 Medication time 6 Please indicate what time this medication/ intervention is given
7.2.6a ANGDose2T6 Time 6 dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnitT6 Time 6 dosage unit. Please indicate the dosage unit 1 - Grams ; 2 – Milligrams ; 3 - Micrograms ; 4 - Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 - Other
7.2.6c ANGDoseUnitOthT6 Please specify If other, please specify
7.2.7h AngMedIntOftenTOth Medication time other Please indicate what time this medication/ intervention is given
7.2.6a ANGDose2TOth Other time dosage  Please indicate units of dosage as a number
7.2.6b ANGDoseUnitTOth Other time dosage unit. Please indicate the dosage unit 1 - Grams ; 2 – Milligrams ; 3 - Micrograms ; 4 - Grams per millilitre ; 5 - Milligrams per millilitre ; 6 - Micrograms per millilitre ; 7 - Millilitres ; 8 - Other
7.2.6c ANGDoseUnitOthTOth Please specify If other, please specify
7.2.9 ANGMedIntOther Comments
7.3 Medications/Interventions no longer used
No Code Question Response
7.3.1 ANGMedIntWhatStop What medications has your child/ adult tried and is no longer using? See 7.2.1
7.3.2 ANGMedIntNameOTH If medication is not listed above, please state
7.3.3 ANGMEDIntReasonPast What was the reason for using this drug/intervention?   1 – Anti epileptic; 2 – Behavioural; 3 – Sleep; 4 – Gastrointestinal; 5 – Complimentary; 6 – Diet; 7 – Vagus nerve stimulation; 8 - Other
7.3.3a ANGMEDIntReasonPastOth
7.3.4 ANGMedIntReasonStop What was the reason for stopping this drug/intervention? 1 – Exacerbation/worsening of seizures; 2 – intolerable side effects ; 3 – inadequate seizure control; 4 – transferring to a new medication; 5 – No longer required; 6 – Other
7.3.4a ANGMedIntReasonStopOth Please describe
7.3.5a ANGMedIntAgeStopped2 What was their age when the medication/intervention was stopped?
7.3.7 ANGMedIntOther Comments
7.5 Therapy Services (ANGTherapySection2)
No Code Question Response
7.5.1a ANGTherapy2 Please tell us which therapy services your child/adult with Angelman syndrome has participated in (either current or no longer undertaken) 1 – Physical therapy/ exercise; 2 – Speech and language therapy; 3 - Augmentative and Alternative Communication (AAC); 4 – Occupational therapy; 5 – Physiotherapy; 6 -  Hippotherapy; 7 – Hydro/aquatic therapy; 8 – Music therapy; 9 – Art therapy; 10 – Pet therapy; 11 – Behavioural therapy; 12 – Adaptive sports; 13 – Play therapy; 14 – Chiropractic; 15 – Diet/ dietetic; 16 – Massage; 17 - Other
7.5.2 ANGTherapyOTH If the service is not listed above, please state
7.5.3a ANGShortCourse Have you participated in a short or intensive course about delivering therapies to your child/ adult? 1 – Physical therapy/ exercise; 2 – Speech and language therapy; 3 - Augmentative and Alternative Communication (AAC); 4 – Occupational therapy; 5 – Physiotherapy; 6 -  Hippotherapy; 7 – Hydro/aquatic therapy; 8 – Music therapy; 9 – Art therapy; 10 – Pet therapy; 11 – Behavioural therapy; 12 – Adaptive sports; 13 – Play therapy; 14 – Chiropractic; 15 – Diet/ dietetic; 16 – Massage; 17 - Other
7.5.4a ANGShortCourseOth Please specify
7.5.5a ANGCurrentPhysical Is your child/ adult currently participating in physical therapy? 1 – Yes; 2 – No
7.5.6 ANGStartStopPhysical Has your child/ adult started and stopped physical therapy? 1 – Yes; 2 – No
7.5.7 ANGStartStopPhyDes Please describe
7.5.8 ANGPhysicalAgeStart At what age did they start physical therapy?
7.5.9 ANGPhysicalAgeStop At what age did they stop physical therapy?
7.5.10 ANGPhysicalFreqCurrent How frequently do they attend this service? 1 – Daily; 2 - 3-5 times per week; 3 - Twice a week; 4 - Once a week; 5 - Twice a month (fortnightly); 6 - Once a month; 7 - Once every 2-3 months (4-6 times per year); 8 - Once every 4-6 months (2-3 times per year); 9 - Once a year; 10 - Less than once a year or one off session; 11 - Other
7.5.11 ANGPhysicalFreqOthCurrent Please specify
7.5.12 ANGPhysicalFreqEnded How frequently did they attend this service? As above
7.5.13 ANGPhysicalFreqOthEnded Please specify
7.5.14 ANGPhysicalDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.15 ANGPhysicalDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.16 ANGCurrentSLP Is your child/ adult currently participating in speech and language therapy? 1 – Yes; 2 - No
7.5.17 ANGStartStopSLP Has your child/ adult started and stopped speech and language therapy? 1 – Yes; 2 – No
7.5.18 ANGStartStopSLPDes Please describe
7.5.19 ANGSLPAgeStart At what age did they start speech and language therapy?
7.5.20 ANGSLPAgeStop At what age did they stop speech and language therapy?
7.5.21 ANGSLPFreqCurrent How frequently do they attend this service? As above
7.5.22 ANGSLPFreqOthCurrent Please specify
7.5.23 ANGSLPFreqEnded How frequently did they attend this service? As above
7.5.24 ANGSLPFreqOthEnded Please specify
7.5.25 ANGSLPDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.26 ANGSLPDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.27 ANGCurrentAAC Is your child/ adult currently participating in Augmentative and Alternative Communication (AAC) therapy? 1 – Yes; 2 - No
7.5.28 ANGStartStopAAC Has your child/ adult started and stopped AAC therapy? 1 – Yes; 2 – No
7.5.29 ANGStartStopAACDes Please describe
7.5.30 ANGAACAgeStart At what age did they start Augmentative and Alternative Communication (AAC) therapy?
7.5.31 ANGAACAgeStop At what age did they stop AAC therapy?
7.5.32 ANGAACFreqCurrent How frequently do they attend this service? As above
7.5.33 ANGAACFreqOthCurrent Please specify
7.5.34 ANGAACFreqEnded How frequently did they attend this service? As above
7.5.35 ANGAACFreqOthEnded Please specify
7.5.36 ANGAACDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.37 ANGAACDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.38 ANGCurrentOT Is your child/ adult currently participating in occupational therapy? 1 – Yes; 2 - No
7.5.39 ANGStartStopOT Has your child/ adult started and stopped occupational therapy? 1 – Yes; 2 – No
7.5.40 ANGStartStopOTDes Please describe
7.5.41 ANGOTAgeStart At what age did they start occupational therapy?
7.5.42 ANGOTAgeStop At what age did they stop occupational therapy?
7.5.43 ANGOTFreqCurrent How frequently do they attend this service? As above
7.5.44 ANGOTFreqOthCurrent Please specify
7.5.45 ANGOTFreqEnded How frequently did they attend this service? As above
7.5.46 ANGOTFreqOthEnded Please specify
7.5.47 ANGOTDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.48 ANGOTDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.49 ANGCurrentPhysio Is your child/ adult currently participating in physiotherapy? 1 – Yes; 2 - No
7.5.50 ANGStartStopPhysio Has your child/ adult started and stopped physiotherapy? 1 – Yes; 2 – No
7.5.51 ANGStartStopPhysioDes Please describe
7.5.52 ANGPhysioAgeStart At what age did they start physiotherapy?
7.5.53 ANGPhysioAgeStop At what age did they stop physiotherapy?
7.5.54 ANGPhysioFreqCurrent How frequently do they attend this service? As above
7.5.55 ANGPhysioFreqOthCurrent Please specify
7.5.56 ANGPhysioFreqEnded How frequently did they attend this service? As above
7.5.57 ANGPhysioFreqOthEnded Please specify
7.5.58 ANGPhysioDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.59 ANGPhysioDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.60 ANGCurrentHippotherapy Is your child/ adult currently participating in hippotherapy? 1 – Yes; 2 - No
7.5.61 ANGStartStopHippo Has your child/ adult started and stopped hippotherapy? 1 – Yes; 2 – No
7.5.62 ANGStartStopHippoDes Please describe
7.5.63 ANGHippotherapyAgeStart At what age did they start hippotherapy?
7.5.64 ANGHippotherapyAgeStop At what age did they stop hippotherapy?
7.5.65 ANGHippotherapyFreqCurrent How frequently do they attend this service? As above
7.5.66 ANGHippotherapyFreqOthCurrent Please specify
7.5.67 ANGHippotherapyFreqEnded How frequently did they attend this service? As above
7.5.68 ANGHippotherapyFreqOthEnded Please specify
7.5.69 ANGHippotherapyDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.70 ANGHippotherapyDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.71 ANGCurrentHydroAquatic Is your child/ adult currently participating in hydro/aquatic therapy? 1 – Yes; 2 - No
7.5.72 ANGStartStopHydro Has your child/ adult started and stopped hydro/aquatic therapy? 1 – Yes; 2 – No
7.5.73 ANGStartStopHydroDes Please describe
7.5.74 ANGHydroAquaticAgeStart At what age did they start hydro/aquatic therapy?
7.5.75 ANGHydroAquaticAgeStop At what age did they stop hydro/aquatic therapy?
7.5.76 ANGHydroAquaticFreqCurrent How frequently do they attend this service? As above
7.5.77 ANGHydroAquaticFreqOthCurrent Please specify
7.5.78 ANGHydroAquaticFreqEnded How frequently did they attend this service? As above
7.5.79 ANGHydroAquaticFreqOthEnded Please specify
7.5.80 ANGHydroAquaticDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.81 ANGHydroAquaticDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.82 ANGCurrentMusical Is your child/ adult currently participating in music therapy? 1 – Yes; 2 - No
7.5.83 ANGStartStopMusical Has your child/ adult started and stopped music therapy? 1 – Yes; 2 – No
7.5.84 ANGStartStopMusDes Please describe
7.5.85 ANGMusicalAgeStart At what age did they start music therapy?
7.5.86 ANGMusicalAgeStop At what age did they stop music therapy?
7.5.87 ANGMusicalFreqCurrent How frequently do they attend this service? As above
7.5.88 ANGMusicalFreqOthCurrent Please specify
7.5.89 ANGMusicalFreqEnded How frequently did they attend this service? As above
7.5.90 ANGMusicalFreqOthEnded Please specify
7.5.91 ANGMusicalDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.92 ANGMusicalDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.93 ANGCurrentArt Is your child/ adult currently participating in art therapy? 1 – Yes; 2 - No
7.5.94 ANGStartStopArt Has your child/ adult started and stopped art therapy? 1 – Yes; 2 – No
7.5.95 ANGStartStopArtDes Please describe
7.5.96 ANGArtAgeStart At what age did they start art therapy?
7.5.97 ANGArtAgeStop At what age did they stop art therapy?
7.5.98 ANGArtFreqCurrent How frequently do they attend this service? As above
7.5.99 ANGArtFreqOthCurrent Please specify
7.5.100 ANGArtFreqEnded How frequently did they attend this service? As above
7.5.101 ANGArtFreqOthEnded Please specify
7.5.102 ANGArtDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.103 ANGArtDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.104 ANGCurrentPet Is your child/ adult currently participating in pet therapy? 1 – Yes; 2 - No
7.5.105 ANGStartStopPet Has your child/ adult started and stopped pet therapy? 1 – Yes; 2 – No
7.5.106 ANGStartStopPetDes Please describe
7.5.107 ANGPetAgeStart At what age did they start pet therapy?
7.5.108 ANGPetAgeStop At what age did they stop pet therapy?
7.5.109 ANGPetFreqCurrent How frequently do they attend this service? As above
7.5.110 ANGPetFreqOthCurrent Please specify
7.5.111 ANGPetFreqEnded How frequently did they attend this service? As above
7.5.112 ANGPetFreqOthEnded Please specify
7.5.113 ANGPetDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.114 ANGPetDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.115 ANGCurrentBehavioural Is your child/ adult currently participating in behavioural therapy? 1 – Yes; 2 - No
7.5.116 ANGStartStopBehav Has your child/ adult started and stopped behavioural therapy? 1 – Yes; 2 – No
7.5.117 ANGStartStopBehDes Please describe
7.5.118 ANGBehaviouralAgeStart At what age did they start behavioural therapy?
7.5.119 ANGBehaviouralAgeStop At what age did they stop behavioural therapy?
7.5.120 ANGBehaviouralFreqCurrent How frequently do they attend this service? As above
7.5.121 ANGBehaviouralFreqOthCurrent Please specify
7.5.122 ANGBehaviouralFreqEnded How frequently did they attend this service? As above
7.5.123 ANGBehaviouralFreqOthEnded Please specify
7.5.124 ANGBehaviouralDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.125 ANGBehaviouralDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.126 ANGCurrentAdaptiveSport Is your child/ adult currently participating in adaptive sports? 1 – Yes; 2 - No
7.5.127 ANGStartStopSport Has your child/ adult started and stopped adaptive sports? 1 – Yes; 2 – No
7.5.128 ANGStartStopSportDes Please describe
7.5.129 ANGAdaptiveSportAgeStart At what age did they start adaptive sports?
7.5.130 ANGAdaptiveSportAgeStop At what age did they stop adaptive sports?
7.5.131 ANGAdaptiveSportFreqCurrent How frequently do they attend this service? As above
7.5.132 ANGAdaptiveSportFreqOthCurrent Please specify
7.5.133 ANGAdaptiveSportFreqEnded How frequently did they attend this service? As above
7.5.134 ANGAdaptiveSportFreqOthEnded Please specify
7.5.135 ANGAdaptiveSportDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.136 ANGAdaptiveSportDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.137 ANGCurrentPlay Is your child/ adult currently participating in play therapy? 1 – Yes; 2 - No
7.5.138 ANGStartStopPlay Has your child/ adult started and stopped play therapy? 1 – Yes; 2 – No
7.5.139 ANGStartStopPlayDes Please describe
7.5.140 ANGPlayAgeStart At what age did they start play therapy?
7.5.141 ANGPlayAgeStop At what age did they stop play therapy?
7.5.142 ANGPlayFreqCurrent How frequently do they attend this service? As above
7.5.143 ANGPlayFreqOthCurrent Please specify
7.5.144 ANGPlayFreqEnded How frequently did they attend this service? As above
7.5.145 ANGPlayFreqOthEnded Please specify
7.5.146 ANGPlayDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.147 ANGPlayDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.148 ANGCurrentChiro Is your child/ adult currently participating in chiropractic treatment? 1 – Yes; 2 - No
7.5.149 ANGStartStopChiro Has your child/ adult started and stopped chiropractic treatment? 1 – Yes; 2 – No
7.5.150 ANGStartStopChiroDes Please describe
7.5.151 ANGChiroAgeStart At what age did they start chiropractic treatment?
7.5.152 ANGChiroAgeStop At what age did they stop chiropractic treatment?
7.5.153 ANGChiroFreqCurrent How frequently do they attend this service? As above
7.5.154 ANGChiroFreqOthCurrent Please specify
7.5.155 ANGChiroFreqEnded How frequently did they attend this service? As above
7.5.156 ANGChiroFreqOthEnded Please specify
7.5.157 ANGChiroDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.158 ANGChiroDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.159 ANGCurrentDiet Is your child/ adult currently participating in treatment for their diet? 1 – Yes; 2 - No
7.5.160 ANGStartStopDiet Has your child/ adult started and stopped treatment for their diet? 1 – Yes; 2 – No
7.5.161 ANGStartStopDietDes Please describe
7.5.162 ANGDietAgeStart At what age did they start treatment for their diet?
7.5.163 ANGDietAgeStop At what age did they stop treatment for their diet?
7.5.164 ANGDietFreqCurrent How frequently do they attend this service? As above
7.5.165 ANGDietFreqOthCurrent Please specify
7.5.166 ANGDietFreqEnded How frequently did they attend this service? As above
7.5.167 ANGDietFreqOthEnded Please specify
7.5.168 ANGDietDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.169 ANGDietDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.170 ANGCurrentMassage Is your child/ adult currently participating in massage therapies? 1 – Yes; 2 - No
7.5.171 ANGMassageAgeStart At what age did they start massage therapies?
7.5.172 ANGStartStopMassage Has your child/ adult started and stopped massage therapies? 1 – Yes; 2 – No
7.5.173 ANGStartStopMasDes Please describe
7.5.174 ANGMassageAgeStop At what age did they stop massage therapies?
7.5.175 ANGMassageFreqCurrent How frequently do they attend this service? As above
7.5.176 ANGMassageFreqOthCurrent Please specify
7.5.177 ANGMassageFreqEnded How frequently did they attend this service? As above
7.5.178 ANGMassageFreqOthEnded Please specify
7.5.179 ANGMassageDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.180 ANGMassageDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.181 ANGCurrentOther Is your child/ adult currently participating in other therapies? 1 – Yes; 2 - No
7.5.182 ANGOtherAgeStart At what age did they start other therapies?
7.5.183 ANGStartStopOther Has your child/ adult started and stopped other therapies? 1 – Yes; 2 – No
7.5.184 ANGStartStopOthDes Please describe
7.5.185 ANGOtherAgeStop At what age did they stop other therapies?
7.5.186 ANGOtherFreqCurrent How frequently do they attend this service? As above
7.5.187 ANGOtherFreqOthCurrent Please specify
7.5.188 ANGOtherFreqEnded How frequently did they attend this service? As above
7.5.189 ANGOtherFreqOthEnded Please specify
7.5.190 ANGOtherDurCurrent How long is a typical session? (in minutes) E.g. 60 minutes
7.5.191 ANGOtherDurEnded How long was a typical session? (in minutes) E.g. 60 minutes
7.5.3 ANGTherapyAGE What was the individual’s age (in years) when the service was started? (years)
7.5.4 ANGTherapyAGEMonths Age in months (if applicable) (months)
7.5.5 ANGTherapyFreq How frequently does the individual attend this service? (e.g. Once a week)
7.5.6 ANGTherapyDur How long is a typical session? (e.g. one hour)
7.5.7 ANGMedIntOther Comments
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Behaviour, Sleep
Module 8
Module 8 – Sleep
General sleep questions sleep disturbance scale and seven day sleep diary. 8.1 General Sleeping (ANGBEHDEVSLEEPGENERAL) No Code Question Response 8.1.1a ANGBEHDEVGOODSLEEP2 On a scale of 1-10 how would you rate your child/adult’s sleep 8.1.2a ANGBEHDEVSLEEPNIGHTYEARS2 At what age did they first sleep through the night? 8.1.2b ANGSLEEPNIGHTUNKNOWN Or, don’t know 8.1.4 ANGRegularSleepingPattern Does (or did) […]
General sleep questions sleep disturbance scale and seven day sleep diary.
8.1 General Sleeping (ANGBEHDEVSLEEPGENERAL)
No Code Question Response
8.1.1a ANGBEHDEVGOODSLEEP2 On a scale of 1-10 how would you rate your child/adult’s sleep
8.1.2a ANGBEHDEVSLEEPNIGHTYEARS2 At what age did they first sleep through the night?
8.1.2b ANGSLEEPNIGHTUNKNOWN Or, don’t know
8.1.4 ANGRegularSleepingPattern Does (or did) your child/ adult have a regular sleeping pattern? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 - Unknown
8.1.5 ANGRegularSleepingPatternOTH Please describe
8.1.6 ANGBEHDEVTROUBLESLEEP Do they have difficulty going to sleep on his/her own? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 - Unknown
8.1.7 ANGWAKENIGHT Do they wake during the night? 1 – Yes, can settle back to sleep independently; 2 – Yes, requires help to resettle; 3 – Yes, remains awake and unsettled; 4 – No; 5 - Unknown
8.1.8 ANGBEHDEVWAKEEARLY Do they wake up early? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 - Unknown
8.1.9 ANGBEHDEVPARENTNEEDED Is a parent/caregiver needed to be there when they go to sleep? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 - Unknown
8.1.10 ANGWAKENIGHT2 Do they experience nocturnal waking (waking during the night)? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 - Unknown
8.1.11 ANGCOSLEEP Does the individual require an adult to co sleep to get to sleep? 1 – Yes, all the time; 2 – Yes, most of the time; 3 – Yes, some of the time; 4 – Yes, rarely; 5 – No, never; 6 - Unknown
8.1.12 ANGMODBED Have you had a modified or special needs bed for sleeping? 1 – Yes, currently have; 2 – Yes, previously had; 3 - No
8.2. Sleep Diary (ANGBEHDEVSLEEPDIARY) Repeated 7 times
No Code Question Response
8.2.1 ANGBEHDEVSLEEPDAY Day of the week 1 – Monday; 2 – Tuesday; 3 – Wednesday; 4 – Thursday; 5 – Friday; 6 – Saturday; 7 - Sunday
8.2.2a ANGBEHDEVBEDTIME2 Time to bed
8.2.2 ANGBEHDEVBEDTIME Time to bed
8.2.3a ANGBEHDEVSLEEPTIME2 Time to sleep
8.2.3 ANGBEHDEVSLEEPTIME Time to sleep
8.2.4 ANGBEHDEVTIMESWOKE Number of times they woke
8.2.5 ANGBEHDEVLONGESTTIME Longest time awake during the night (in minutes) e.g 10 mins
8.2.6a ANGBEHDEVWAKETIME2 Wake up time
8.2.6 ANGBEHDEVWAKETIME Wake up time
8.2.7 ANGBEHDEVNAPNO Daytime naps number
8.2.8 ANGBEHDEVNAPDUR Duration of daytime naps (minutes)
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Sleep
Module 9
Module 9 – The Sleep Disturbance Scale for Children
The Sleep Disturbance Scale for Children (SDSC) is a 27-item inventory rated on a 5 point Likert-type scale. The instrument’s purpose is to categorize sleep disorders in children. The Sleep Disturbance Scale for Children (ANGSleepDisturbance) No Code Question Response 9.1.1 ANGSleepDisturbance1 How many hours of sleep does your child have per night? 1 – 9-11 […]
The Sleep Disturbance Scale for Children (SDSC) is a 27-item inventory rated on a 5 point Likert-type scale. The instrument’s purpose is to categorize sleep disorders in children.
The Sleep Disturbance Scale for Children (ANGSleepDisturbance)
No Code Question Response
9.1.1 ANGSleepDisturbance1 How many hours of sleep does your child have per night? 1 – 9-11 hours; 2 – 8-9 hours; 3 – 7-8 hours; 4 – 5-7 hours; 5 – Less than 5 hours
9.1.2 ANGSleepDisturbance2 How long after going to bed does your child usually fall asleep? 1 – Less than 15 minutes 2 – 15-30 minutes 3 – 30-45 minutes 4 – 45-60 minutes 5 – More than 60 minutes
9.1.3 ANGSleepDisturbance3 Your child does not like going to bed 1 – Never 2 – Occasionally 3 – Sometimes 4 – Often 5 – Always 6 – Don’t know
9.1.4 ANGSleepDisturbance4 Your child has difficulty in getting to sleep at night As above
9.1.5 ANGSleepDisturbance5 Your child feels anxious or afraid when falling asleep As above
9.1.6 ANGSleepDisturbance6 Your child startles or jerks parts of the body while falling asleep As above
9.1.7 ANGSleepDisturbance7 Your child shows repetitive actions such as rocking or head banging while falling asleep As above
9.1.8 ANGSleepDisturbance8 Your child has very strange dreams while falling asleep As above
9.1.9 ANGSleepDisturbance9 Your child sweats a lot while falling asleep As above
9.1.10 ANGSleepDisturbance10 Your child wakes up more than twice per night As above
9.1.11 ANGSleepDisturbance11 After waking up in the night, your child has trouble falling asleep again As above
9.1.12 ANGSleepDisturbance12 Your child has twitching or jerking of the legs during sleep or often changes position during the night or kicks the covers off the bed As above
9.1.13 ANGSleepDisturbance13 Your child has trouble breathing during the night As above
9.1.14 ANGSleepDisturbance14 Your child gasps for breath or is unable to breathe during sleep As above
9.1.15 ANGSleepDisturbance15 Your child snores As above
9.1.16 ANGSleepDisturbance16 Your child sweats a lot during the night As above
9.1.17 ANGSleepDisturbance17 You have seen your child sleep walking As above
9.1.18 ANGSleepDisturbance18 You have seen your child verbalising in his/her sleep As above
9.1.19 ANGSleepDisturbance19 Your child grinds his/her teeth during sleep As above
9.1.20 ANGSleepDisturbance20 Your child sometimes wakes from sleep screaming or confused so that you cannot seem to get through to him/her, but has no memory of these events the next morning As above
9.1.21 ANGSleepDisturbance21 Your child has nightmares which he/she can’t remember the next day As above
9.1.22 ANGSleepDisturbance22 Your child is hard to wake up in the morning As above
9.1.23 ANGSleepDisturbance23 Your child wakes up in the morning feeling tired As above
9.1.24 ANGSleepDisturbance24 Your child sometimes feels unable to move when waking up in the morning As above
9.1.25 ANGSleepDisturbance25 Your child is tired during the day As above
9.1.26 ANGSleepDisturbance26 Your child falls asleep suddenly in unusual situations As above
9.1.27 ANGSleepDisturbance27 Disorders of initiating and maintaining sleep  Sum of items 1,2,3,4,5,10,11 Calculated
9.1.28 ANGSleepDisturbance28 Sleep Breathing Disorders Sum of items 13,14,15 Calculated
9.1.29 ANGSleepDisturbance29 Disorders of arousal Sum of items 17,20,21 Calculated
9.1.30 ANGSleepDisturbance30 Sleep-Wake Transition Disorders Sum of items 6,7,8,12,18,19 Calculated
9.1.31 ANGSleepDisturbance31 Disorders of excessive somnolence  Sum of items 22,23,24,25,26 Calculated
9.1.32 ANGSleepDisturbance32 Sleep Hyperhydrosis  Sum of items 9,16 Calculated
9.1.33 ANGSleepDisturbance33 Total score Sum of factor scores Calculated
 
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Epilepsy/ Seizure
Module 10
Module 10a: Change in Seizure Activity
Updates to this module are made as changes are observed, but are also prompted in the 6 month update. No Code Question Response 10a.1 6MoSeizAge Current age A.2.3 6MoSeizType What type of seizures have they experienced?(Check all that apply) 1 – Absence Seizures (“Petit Mal Seizures”), 2 -Myoclonic seizures, 3 – Atonic Seizures (“Drop Attacks”), […]

Updates to this module are made as changes are observed, but are also prompted in the 6 month update.

No Code Question Response
10a.1 6MoSeizAge Current age
A.2.3 6MoSeizType What type of seizures have they experienced?(Check all that apply) 1 - Absence Seizures (“Petit Mal Seizures”),
2 -Myoclonic seizures,
3 - Atonic Seizures (“Drop Attacks”),
4 -  Tonic, Clonic and Tonic-Clonic (Formerly called Grand Mal) Seizures
5 - Unknown/unaware of type
A.2.4 6MoSeizStatus What is the current seizure status? 1 – Controlled without medication;
2 – Controlled with medication;
3 – Mostly controlled with occasional breakthroughs;
4 – Controlled with diet;
5 – Uncontrolled with medication;
6 – Uncontrolled with medication;
7 - Unknown
A.2.5 6MoSeizBreak What do you feel is the source of breakthrough seizures? Check all that apply 1 - Illness/infection without fever;
2 - Illness/infection with fever;
3 - Co-medication/drug interaction;
4 - Tiredness/ fatigue;
5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement;
6 - Hot weather, overheating or dehydration;
7 – Hormonal;
8 – Other;
9 - Unknown
A.2.6 6MoSeizFreqA How often do seizures occur? 1- Daily;
2- Weekly;
3– Monthly;
4 – Yearly;
5 – Rarely (less than once a year)
A.2.7 6MoSeizFreqB How many seizures do they typically have in this time frame? 1 – Less than 5; 
2 –  5-10; 
3 – 10-20; 
4 – 20-50; 
5 – More than 50
A.2.8 6MoSeizTrigger What events, if any, trigger their seizures? 1 - Illness/infection without fever;
2 - Illness/infection with fever;
3 - Co-medication/drug interaction;
4 - Tiredness/ fatigue;
5 - Emotions or overstimulation, e.g. stress, anxiety, or excitement;
6 - Hot weather, overheating or dehydration;
7 – Hormonal;
8 – Other;
9 - Unknown
A.2.9 6MoSeizTrigOth Please specify
A.2.10 6MoSeizMed Was medication given? Yes – please report in the medications and interventions module,
No –
A.2.11 6MoSeizHosp Was hospitalisation required? Yes – please report in the medical history and hospitalisations module,
No–
A.2.12 6MoSeizMedOn Was ongoing medication prescribed at this stage? Yes – please report in the medications and interventions module,
No –
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Clinics/ Diagnostic Tests, Epilepsy/ Seizure, Feeding/Eating, Hospitalisations, Illness, Medication
Module 10
Module 10b: New Hospitalisations or Surgical Procedures
Updates to this module are made as required if there are new hospitalisations or surgeries. 4.4 Details of Hospitalisation/Surgery (ANGHospitalVisit1) No Code Question Response 4.4.3a ANGAgeHospitalVisit1a Child/ adult’s age at admission 4.4.5 ANGHospitalVisit1Reason Hospitalisation reason (Range/ DefaultWidget; ANGHospReason) 1 – Seizure; 2 – Feeding problems; 3 – Surgery; 4 – Infection; 5 – Other 4.4.6 […]
Updates to this module are made as required if there are new hospitalisations or surgeries.
4.4 Details of Hospitalisation/Surgery (ANGHospitalVisit1)
No Code Question Response
4.4.3a ANGAgeHospitalVisit1a Child/ adult's age at admission
4.4.5 ANGHospitalVisit1Reason Hospitalisation reason (Range/ DefaultWidget; ANGHospReason) 1 – Seizure; 2 – Feeding problems; 3 – Surgery; 4 – Infection; 5 - Other
4.4.6 ANGHospSurgery1 If surgery, what was the reason? (e.g. Corrective alignment (toe walking, scoliosis), strabismus
4.4.7 ANGHospOther1 If other, what was the reason?
4.4.8 ANGHospitalVisit1DaysInHospita Number of days in hospital
4.4.10 ANGHospitalVisit1LevelOfCare2 Level of care 1 – Low (medical ward); 2 – Medium (high dependency unit); 3 – High (Intensive care) ; 4 – Emergency department
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Medication
Module 10
Module 10c: New Medication or Changed Dose
Updates to this module are made as changes are made, but are also prompted in the 6 month update. 7.2 Medication/ Intervention Started/ Changed (ANGMedIntCurrent2) No Code Question Response 7.2.1 ANGMedIntWhat2 Please tell us what medication your child/ adult has started or changed dose? 1 – Cabamazepine (Tegretol)2 – Clobazam (Frisium, Onfi)3 – Clonozepam (Rivotril)4 […]

Updates to this module are made as changes are made, but are also prompted in the 6 month update.

7.2 Medication/ Intervention Started/ Changed (ANGMedIntCurrent2)
NoCodeQuestionResponse
7.2.1ANGMedIntWhat2Please tell us what medication your child/ adult has started or changed dose?

1 – Cabamazepine (Tegretol)
2 – Clobazam (Frisium, Onfi)
3 – Clonozepam (Rivotril)
4 – Ethosuximide (Zarontin)
5 – Folate (Folic acid)
6 – Lamotrigine (Lamictal, Lamogine)
7 – Levetiracetam (Keppra)
8 – Oxcarbazepine (Trileptal)
9 – Phenobarbintone aspen (Dilantin)
10 – Sodium valproate (Epilim)
11 – Topiramate (Topamax)
12 – Aripiprazole (Abilify)
13 – Methylphenidate (Ritalin)
14 – Risperidone (Risperdal)
15– Efalex (Efamol)
16 – Evening primrose oil (Efamol)
17 – Amitriptyline (Endep)
18 – Diazepam (Valium)
19– Melatonin (Circadin)
20 – Midazolam (Versed)
21 – Nitrazepam (Mogadon)
22 – Phenobarbital (Phenobarb)
23 – Promethazine (Phenergan)
24 – Trimeprazine tartrate (Vallergan forte)
25 – Lactulose (Actilax, Dulose)
26 – Ommeprazole (Losec, Acimax, Maxor)
27 – Ondansetron (Zofran)
28 – Macrogol (Osmolax)
29 -  Probiotic (Cytopro)
30 - Psyllium (Metamucil)
31 – Baclofen (Lioresal, Gablofen)
32 – Benzatropine (Benztrop)
33 – Calcium (Caltrate)
34 – Celepram (Citalopram)
35 – Cephalexin (Keflex)
36 – Clonidine (Diaformin)
37 – Cyproheptadine (Periactin)
38 – Fluticasone (Flixotide)
39 – Hexamine hipp (hiprex)
40 – Minocycline (Akamin, Minomycin)
41 – Mometasone (Nasonex)
42 – Montelukast (Singulair)
43 – Netformin (Diaformin)
44 – Oxybutynin (Ditropan)
45 – Pantoprazole (Somac)
46 - Miralax /polyethylene glycol
47 – Lactulose
48 – Dulcolax/Bisacodyl
49 – Benefiber/Metamucil or other fiber laxative
50 – Cannabis or cannabinoid
51 – Ketogenic diet
52 – LGIT diet
53 – Other diet (please specify)
54 – Vagus Nerve Stimulation (VNS)

7.2.2ANGMedIntNameOTHIf medication is not listed above, please state 
7.2.3ANGMedIntReasonWhat is the reason for using this drug/intervention? Check all that apply1 – Anti epileptic;
2 – Behavioural;
3 – Sleep;
4 – Gastrointestinal;
5 – Complimentary;
6 – Diet;
7 – Vagus nerve stimulation;
8 - Other
7.2.3aANGMedIntReasonOthOther reason 
7.2.4aANGMedIntAgeStarted2What was your child/ adult's age when medication/ intervention was started? 
7.2.7aAngMedIntOften2How often is this medication given?1 - Once a day;
2 - Twice a day;
3 - 3 times a day;
4 - 4 times a day;
5 - 5 times a day;
6 - 6 times a day;
7 - As needed;
8 - Other
7.2.7aiANGDoseSameIs the same dose given each time?Yes/ No
7.2.6aANGDose2Dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitDosage unit. Please indicate the dosage unit

1 - Grams (g);
2 – Milligrams (mg);
3 - Micrograms (mcg);
4 - Grams per millilitre (g/ml);
5 - Milligrams per millilitre (mg/ml);
6 - Micrograms per millilitre (mcg/ml);
7 - Millilitres (ml);
8 - Other

7.2.6cANGDoseUnitOthPlease specify If other, please specify 
7.2.7bAngMedIntOftenT1Medication time 1 Please indicate what time this medication/ intervention is given 
7.2.6aANGDose2T1Time 1 dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitT1Time 1 dosage unit. Please indicate the dosage unit1 - Grams (g); 
2 – Milligrams (mg); 
3 - Micrograms (mcg); 
4 - Grams per millilitre (g/ml); 
5 - Milligrams per millilitre (mg/ml); 
6 - Micrograms per millilitre (mcg/ml); 
7 - Millilitres (ml); 
8 - Other
7.2.6cANGDoseUnitOthT1Please specify If other, please specify 
7.2.7cAngMedIntOftenT2Medication time 2 Please indicate what time this medication/ intervention is given 
7.2.6aANGDose2T2Time 2 dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitT2Time 2 dosage unit. Please indicate the dosage unit1 - Grams (g); 
2 – Milligrams (mg); 
3 - Micrograms (mcg); 
4 - Grams per millilitre (g/ml); 
5 - Milligrams per millilitre (mg/ml); 
6 - Micrograms per millilitre (mcg/ml); 
7 - Millilitres (ml); 
8 - Other
7.2.6cANGDoseUnitOthT2Please specify If other, please specify 
7.2.7dAngMedIntOftenT3Medication time 3 Please indicate what time this medication/ intervention is given 
7.2.6aANGDose2T3Time 3 dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitT3Time 3 dosage unit. Please indicate the dosage unit1 - Grams (g); 
2 – Milligrams (mg); 
3 - Micrograms (mcg); 
4 - Grams per millilitre (g/ml); 
5 - Milligrams per millilitre (mg/ml); 
6 - Micrograms per millilitre (mcg/ml); 
7 - Millilitres (ml); 
8 - Other
7.2.6cANGDoseUnitOthT3Please specify If other, please specify 
7.2.7eAngMedIntOftenT4Medication time 4 Please indicate what time this medication/ intervention is given 
7.2.6aANGDose2T4Time 4 dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitT4Time 4 dosage unit. Please indicate the dosage unit1 - Grams (g); 
2 – Milligrams (mg); 
3 - Micrograms (mcg); 
4 - Grams per millilitre (g/ml); 
5 - Milligrams per millilitre (mg/ml); 
6 - Micrograms per millilitre (mcg/ml); 
7 - Millilitres (ml); 
8 - Other
7.2.6cANGDoseUnitOthT4Please specify If other, please specify 
7.2.7fAngMedIntOftenT5Medication time 5 Please indicate what time this medication/ intervention is given 
7.2.6aANGDose2T5Time 5 dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitT5Time 5 dosage unit. Please indicate the dosage unit1 - Grams (g); 
2 – Milligrams (mg); 
3 - Micrograms (mcg); 
4 - Grams per millilitre (g/ml); 
5 - Milligrams per millilitre (mg/ml); 
6 - Micrograms per millilitre (mcg/ml); 
7 - Millilitres (ml); 
8 - Other
7.2.6cANGDoseUnitOthT5Please specify If other, please specify 
7.2.7gAngMedIntOftenT6Medication time 6 Please indicate what time this medication/ intervention is given 
7.2.6aANGDose2T6Time 6 dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitT6Time 6 dosage unit. Please indicate the dosage unit1 - Grams (g); 
2 – Milligrams (mg); 
3 - Micrograms (mcg); 
4 - Grams per millilitre (g/ml); 
5 - Milligrams per millilitre (mg/ml); 
6 - Micrograms per millilitre (mcg/ml); 
7 - Millilitres (ml); 
8 - Other
7.2.6cANGDoseUnitOthT6Please specify If other, please specify 
7.2.7hAngMedIntOftenTOthMedication time other Please indicate what time this medication/ intervention is given 
7.2.6aANGDose2TOthOther time dosage (as a number) Please indicate units of dosage as a number(e.g. 100, 2.5) 
7.2.6bANGDoseUnitTOthOther time dosage unit. Please indicate the dosage unit1 - Grams (g); 
2 – Milligrams (mg); 
3 - Micrograms (mcg); 
4 - Grams per millilitre (g/ml); 
5 - Milligrams per millilitre (mg/ml); 
6 - Micrograms per millilitre (mcg/ml); 
7 - Millilitres (ml); 
8 - Other
7.2.6cANGDoseUnitOthTOthPlease specify If other, please specify 
7.2.9ANGMedIntOtherComments 
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Medication
Module 10
Module 10d: Stopped Medication
Updates to this module are made as changes are made, but are also prompted in the 6 month update. 7.3 Medication/ Intervention Stopped (ANGMedIntCeased2) No Code Question Response 7.3.1 ANGMedIntWhatStop2 What medication has your child/ adult stopped? See 7.2.1 7.3.2 ANGMedIntNameOTH If medication is not listed above, please state String/ TextArea 7.3.3 ANGMEDIntReasonPast What was […]

Updates to this module are made as changes are made, but are also prompted in the 6 month update.

7.3 Medication/ Intervention Stopped (ANGMedIntCeased2)
No Code Question Response
7.3.1 ANGMedIntWhatStop2 What medication has your child/ adult stopped? See 7.2.1
7.3.2 ANGMedIntNameOTH If medication is not listed above, please state String/ TextArea
7.3.3 ANGMEDIntReasonPast What was the reason for using this drug/intervention? (Check all that apply) 1 – Anti epileptic;
2 – Behavioural;
3 – Sleep;
4 – Gastrointestinal;
5 – Complimentary;
6 – Diet;
7 – Vagus nerve stimulation;
8 - Other
7.3.3a ANGMEDIntReasonPastOth Other reason
7.3.4 ANGMedIntReasonStop What was the reason for stopping this drug/intervention? (Check all that apply) 1 – Exacerbation/worsening of seizures;
2 – intolerable side effects (please describe);
3 – inadequate seizure control;
4 – transferring to a new medication;
5 – No longer required;
5 – Other (Please describe)
7.3.4a ANGMedIntReasonStopOth Please describe
7.3.5a ANGMedIntAgeStopped2 What was their age when the medication/intervention was stopped?
7.3.7 ANGMedIntOther Comments

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Therapy/ Therapies
Module 10
Module 10e: New Therapy Service or Changed Frequency or Duration
Updates to this module are made as changes are made, but are also prompted in the 6 month update. New Therapy (ANGTherapyNewMultisection) No Code Question Response   ANGTherapy2Start Please tell us which therapy services your child/adult has changed or started? 1 – Physical therapy/ exercise; 2 – Speech and language therapy; 3 – Augmentative and […]

Updates to this module are made as changes are made, but are also prompted in the 6 month update.

New Therapy (ANGTherapyNewMultisection)
NoCodeQuestionResponse
 ANGTherapy2StartPlease tell us which therapy services your child/adult has changed or started?1 – Physical therapy/ exercise;
2 – Speech and language therapy;
3 - Augmentative and Alternative Communication (AAC);
4 – Occupational therapy;
5 – Physiotherapy;
6 -  Hippotherapy;
7 – Hydro/aquatic therapy;
8 – Music therapy;
9 – Art therapy;
10 – Pet therapy;
11 – Behavioural therapy;
12 – Adaptive sports;
13 – Play therapy;
14 – Chiropractic;
15 – Diet/ dietetic;
16 – Massage;
17 - Other
 ANGTherapyOTHIf the service is not listed above, please state 
 ANGTherapyAGEMultiAt what age did they start this therapy? 
 ANGPhysicalFreqCurrentHow frequently do they attend this service?1 – Daily;
2 - 3-5 times per week;
3 - Twice a week;
4 - Once a week;
5 - Twice a month (fortnightly);
6 - Once a month;
7 - Once every 2-3 months (4-6 times per year);
8 - Once every 4-6 months (2-3 times per year);
9 - Once a year;
10 - Less than once a year or one off session;
11 - Other
 ANGPhysicalFreqOthCurrentPlease specify 
 ANGPhysicalDurCurrentHow long is a typical session? (in minutes) 
 ANGMedIntOtherComments 
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Therapy/ Therapies
Module 10
Module 10f: Stopped Therapy Service
Updates to this module are made as changes are made, but are also prompted in the 6 month update. Therapy Stopped (ANGTherapyStopMultisection) No Code Question Response ANGTherapy2Stop Please tell us which therapy service/s your child/adult has stopped? 1 – Physical therapy/ exercise; 2 – Speech and language therapy; 3 – Augmentative and Alternative Communication (AAC); […]

Updates to this module are made as changes are made, but are also prompted in the 6 month update.

Therapy Stopped (ANGTherapyStopMultisection)
No Code Question Response
ANGTherapy2Stop Please tell us which therapy service/s your child/adult has stopped? 1 – Physical therapy/ exercise;
2 – Speech and language therapy;
3 - Augmentative and Alternative Communication (AAC);
4 – Occupational therapy;
5 – Physiotherapy;
6 -  Hippotherapy;
7 – Hydro/aquatic therapy;
8 – Music therapy;
9 – Art therapy;
10 – Pet therapy;
11 – Behavioural therapy;
12 – Adaptive sports;
13 – Play therapy;
14 – Chiropractic;
15 – Diet/ dietetic;
16 – Massage;
17 - Other
ANGTherapyOTH If the service is not listed above, please state
ANGNewTherapyAgeStop At what age did they stop the therapy?
ANGPhysicalFreqEnded How frequently did they attend this service? 1 – Daily;
2 - 3-5 times per week;
3 - Twice a week;
4 - Once a week;
5 - Twice a month (fortnightly);
6 - Once a month;
7 - Once every 2-3 months (4-6 times per year);
8 - Once every 4-6 months (2-3 times per year);
9 - Once a year;
10 - Less than once a year or one off session;
 11 - Other 
ANGPhysicalFreqOthEnded Please specify
ANGPhysicalDurEnded How long was a typical session? (in minutes)
ANGMedIntOther Comments
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Clinical Trials/ Studies
Module 10
Module 10g: Clinical Trials
This module is completed when entering the patient registry and updated as required. Information is collected about clinical trials and/or clinics that the participant may be involved in. Study participation (ANGAdditionalInformation2) No Code Question Response 11.2.1 ANGOtherStudyWhatNEW Name of study/ trial 2 – Natural History Study 2018 onward 3 – Metfolin Trial (Dietary Supplements for […]
This module is completed when entering the patient registry and updated as required. Information is collected about clinical trials and/or clinics that the participant may be involved in.
Study participation (ANGAdditionalInformation2)
No Code Question Response
11.2.1 ANGOtherStudyWhatNEW Name of study/ trial 2 - Natural History Study 2018 onward 3 - Metfolin Trial (Dietary Supplements for the Treatment of Angelman Syndrome) 4 - Levodopa Trial 5 - Minocycline Trial (Minocycline in the Treatment of Angelman Syndrome) - University of South Florida, Tampa, FL (Ed Weeber); 6 - Minocycline Trial (Study to Evaluate the Efficacy and Safety of Minocycline in Angelman Syndrome A-MANECE) – Puerta de Hierro University Hospital, Spain (Belen Ruiz-Antorán); 7 - Ovid Trial; 8 - MRI trial - Baylor College of Medicine, Houston, TX (Sarika Peters); 9 - Ovid STARS Trial (A Study in Adults and Adolescents With Angelman Syndrome); 10 - MRI trial at UNC, Chapel Hill, NC (Heather Hazlett); 11 - Gait trial - University of South Florida, Tampa, FL (Joe Grieco); 12 - Lena device trial - University of South Florida, Tampa, FL (Ruth Bahr); 13 - Sleep trial (Kansas); 14 – Study on the Brain Network of Angelman Syndrome, Fudan University, China (Dr Yi Wang); 15 – Disruptive Nutrition FANS/ketone trial; 16 – GeneTX KIK-AS trial; 17 – Roche & Genetech FREESIAS Endpoint Study; 18 – Roche Tangelo Clinical trial; 19 - Other
11.2.2 ANGOtherStudyOther2 Name of study/ trial
11.2.3 ANGOtherStudyPart Are you still participating in other study/ trial? 1 – Yes; 2 – No
11.2.4 MinocyclineTrialA Are you still participating in the Minocycline Trial (Minocycline in the Treatment of Angelman Syndrome)? 1 – Yes; 2 – No
11.2.5 MinocyclineTrialB Are you still participating in the Minocycline Trial (Study to Evaluate the Efficacy and Safety of Minocycline in Angelman Syndrome A-MANECE)? 1 – Yes; 2 – No
11.2.6 MRITrialA Are you still participating in the MRI trial at Baylor College of Medicine? 1 – Yes; 2 – No
11.2.7 MRITrialB Are you still participating in the MRI trial at UNC? 1 – Yes; 2 – No
11.2.8 GaitTrial Are you still participating in the Gait trial at the University of South Florida? 1 – Yes; 2 – No
11.2.9 LenaTrial Are you still participating in the Lena device trial at the University of South Florida? 1 – Yes; 2 – No
11.2.10 SleepTrial Are you still participating in the Sleep trial at Kansas? 1 – Yes; 2 – No
11.2.11 DisNutYN Are you still participating in the Disruptive Nutrition FANS/ketone trial? 1 – Yes; 2 – No
11.2.12 GeneTXYN Are you still participating in the GeneTX KIK-AS trial? 1 – Yes; 2 – No
11.2.13 FREESIASYN Are you still participating in the Roche & Genetech FREESIAS Endpoint Study? 1 – Yes; 2 – No
11.2.14 TangeloYN Are you still participating in the Roche Tangelo Clinical trial? 1 – Yes; 2 – No
11.2.15 BrainTrial Are you still participating in the Study on the Brain Network of Angelman Syndrome, Fudan University, China (Dr Yi Wang) 1 – Yes; 2 – No
11.2.17 NaturalHistSiteNew Which 2018-current Natural History Study site? 1 - Rady Children's Hospital, San Diego, CA; 2 - Children's Hospital, Boston; 3 - Other
11.2.18 NaturalHistSiteNewOth If other, please state
11.2.19 NaturalHistYN Are you still participating in the Natural History Study? 1 – Yes; 2 – No
11.2.20 FolicBetaineSite Which Folic Acid/Betaine Trial site? 1 -  Baylor-Texas Children's, Houston, TX.  (Art Beaudet then Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner);
11.2.21 FolicBetaineYN re you still participating in the Folic Acid/Betaine Trial? 1 – Yes; 2 – No
11.2.22 MetafolinSite Which Metafolin Trial (Dietary Supplements for the Treatment of Angelman Syndrome) site? 1 - Baylor-Texas Children's, Houston, TX.  (Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner);
11.2.23 MetafolinYN Are you still participating in the Metafolin Trial? 1 – Yes; 2 – No
11.2.24 LevodopaSite Which Levodopa Trial site? 1 - Baylor-Texas Children's, Houston, TX.  (Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner); 5 - UCSF, San Francisco, CA (Anne Slavotinek); 6 - Children's Hospital, Cincinnati, OH (Logan Wink); 7 - Vanderbilt Children's Hospital, Nashville, TN (Greg Barnes, then Cary Fu);
11.2.25 LevodopaYN Are you still participating in the Levodopa Trial? 1 – Yes; 2 – No
11.2.26 OvidTrialSite Which Ovid Trial site? 1 - Baylor-Texas Children's, Houston, TX.  (Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Massachusetts General Hospital, Boston, MA (Ron Thibert); 5 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner); 6 - Children's Hospital, Cincinnati, OH (Logan Wink); 7 - Vanderbilt Children's Hospital, Nashville, TN (Kevin Haas);
11.2.27 OvidTrialYN Are you still participating in the Ovid Trial? 1 – Yes; 2 – No
11.2.28 OvidSTARSsite Which Ovid STARS Trial (A Study in Adults and Adolescents With Angelman Syndrome) Site? Arizona California Florida Georgia 1 -  Arizona 2 -  California 3 -  Florida 4 -  Georgia 5 -  Illinois 6 -  Massachusetts 7 -  Ohio 8 -  Pennsylvania 9 -  South Carolina 10 - Tennessee 11 -  Israel
11.2.29 OvidSTARSTrialYN Are you still participating in the Ovid STARS Trial? 1 – Yes; 2 – No
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Clinics/ Diagnostic Tests
Module 10
Module 10h: Clinic Visit
This module is completed when entering the patient registry and updated as required. Information is collected about clinics that the participant attends. No Code Question Response 11.3.1 ClinicSite Region where clinic(s) located 1 – United States of America; 2 – Other North America; 3 – South America; 4 – Europe; 5 – Asia; 6 – […]
This module is completed when entering the patient registry and updated as required. Information is collected about clinics that the participant attends.
No Code Question Response
11.3.1 ClinicSite Region where clinic(s) located 1 - United States of America; 2 - Other North America; 3 - South America; 4 – Europe; 5 – Asia; 6 – Africa; 7 - Oceania
11.3.2 ClinicSiteUSA Which clinic(s) in the United States of America? 1 - Seattle Children's Hospital (Seattle, Washington US); 2 - UCSF Benioff Children's Hospital (San Francisco, California US); 3 - UCLA CART Center for Autism Research and Treatment (Los Angeles, California US); 4 - Rady Children's Hospital San Diego (San Diego, California US) ; 5 - Intermountain Primary Children's Medical Center (Salt Lake City, Utah US); 6 - Children's Hospital Colorado (Aurora, Colorado US); 7 - Texas Children's Hospital (Houston, Texas US); 8 - Mayo Clinic (Rochester, Minnesota US) ; 9 - Minnesota Epilepsy Group (St. Paul, Minnesota US); 10 - Rush University Medical Center (Chicago, Illinois US); 11 - Lurie Children's Hospital Chicago (Chicago, Illinois US); 12 - Monroe Carell Jr. Children's Hospital (Nashville, Tennessee US); 13 - Geisinger Autism & Developmental Medicine Institute (Lewisburg, Pennsylvania US); 14 - NYU Langone Medical Center (New York, New York US); 15 - Weill Cornell Medical College of New York (New York, New York US); 16 - Massachusetts General Hospital (Boston, Massachusetts US); 17 - UNC Carolina Institute for Developmental Disabilities (Carrboro, North Carolina US); 18 - Miami Children's Hospital (Miami, Florida US); 19 - Other
11.3.3 WhatOtherClinicUSA Name and location
11.3.23 ClinicSiteNorthAmerica Which clinic(s) in other North American countries? 1 - Children's Hospital of Eastern Ontario (Ottowa, Canada); 2 - BC Children's Hospital; 3 Other
11.3.24 WhatOtherClinicNorthAmerica Name and location
11.3.28 ClinicSiteSouthAmerica Which clinic(s) in South America? 1 - Brazil Angelman Clinic; 2 - Argentina Angelman Syndrome Clinic; 3 - Other
11.3.29 WhatOtherClinicSouthAmerica Name and location
11.3.33 ClinicSiteEurope Which clinic(s) in Europe? 1 - Erasmus Angelman Syndrome Center, Rotterdam, The Netherlands; 2 - St Mary’s Hospital, Manchester, UK; 3 - Edmond and Lily Safra Children's Hospital, Sheba Tel Hashomer (Tel Aviv, Israel); 4 - Other
11.3.34 WhatOtherClinicEurope Name and location
11.3.38 ClinicSiteAsia Which clinic(s) in Asia? 1 - Edmond and Lily Safra Children's Hospital, Sheba Tel Hashomer (Tel Aviv, Israel); 2 - Other
11.3.39 WhatOtherClinicAsia Name and location
11.3.41 ClinicSiteAfrica Which clinic(s) in Africa? 1 - Edmond and Lily Safra Children's Hospital, Sheba Tel Hashomer (Tel Aviv, Israel) ; 2 - Other
11.3.42 WhatOtherClinicAfrica Name and location
11.3.45 ClinicSiteOceania Which clinic(s) in Oceania? 1 - Melbourne Royal Children’s Hospital Clinic; 2 - Development Assessment Service, St George Hospital, Kogarah, NSW; 3 - Other
11.3.46 WhatOtherClinicOceania Name and location
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Clinics/ Diagnostic Tests, Epilepsy/ Seizure, Illness
Module 10
Module 10i: Pathology and Diagnostics
This module is completed when entering the patient registry and updated as required. Data and results are collected on EEG, bloods, MRI, CSF, microbiome and other diagnostics. 10.1 Pathology and diagnostics (ANGPathology) No Code Question Response 10.1.1 ANGTestType Test type 1 – EEG 2 – Blood test 3 – MRI 4 – Cerebral spinal fluid […]
This module is completed when entering the patient registry and updated as required. Data and results are collected on EEG, bloods, MRI, CSF, microbiome and other diagnostics.
10.1 Pathology and diagnostics (ANGPathology)
No Code Question Response
10.1.1 ANGTestType Test type 1 – EEG 2 – Blood test 3 – MRI 4 – Cerebral spinal fluid 5 – Microbiome testing 6 - Other
10.1.2 ANGOtherTest Please specify
10.1.3 ANGTestDate Test date
10.1.4 ANGInvestigation Reason for investigation 1 – Illness 2 – Pain 3 – Unusual or abnormal behaviour in the adult/child with AS 4 – Routine 5 - Other
10.1.5 ANGResults Results 1 – Typical/Normal 2 – Abnormal 3 - Unknown
10.1.6 ANGComments Comments Participant specifies
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Clinical Trials/ Studies
Module 11
Module 11 – Clinical Trials and Studies
Details of clinical trials and studies the participant is involved in or has been involved in including Natural History studies and Angelman clinics. 11.1 Clinics and Research Studies (ANGOtherStudy) No Code Question Response 11.0.1 ANGOtherStudyYNU Has your child/ adult ever been involved in any research studies or clinical trials? 1 – Yes; 2 – No; […]
Details of clinical trials and studies the participant is involved in or has been involved in including Natural History studies and Angelman clinics.
11.1 Clinics and Research Studies (ANGOtherStudy)
No Code Question Response
11.0.1 ANGOtherStudyYNU Has your child/ adult ever been involved in any research studies or clinical trials? 1 – Yes; 2 – No; 3 - Unknown
11.0.2 ANGClinicYNU Has your child/ adult ever attended an Angelman Syndrome clinic? 1 – Yes; 2 – No; 3 - Unknown
11.2 Study Participation (ANGAdditionalInformation)
No Code Question Response
11.2.1 ANGOtherStudyWhat2 Name of study/ trial 1 - Natural History Trial 2011-2014 2 - Natural History Study 2018 onward 3 - Metfolin Trial (Dietary Supplements for the Treatment of Angelman Syndrome) 4 - Levodopa Trial 5 - Minocycline Trial (Minocycline in the Treatment of Angelman Syndrome) - University of South Florida, Tampa, FL (Ed Weeber); 6 - Minocycline Trial (Study to Evaluate the Efficacy and Safety of Minocycline in Angelman Syndrome A-MANECE) – Puerta de Hierro University Hospital, Spain (Belen Ruiz-Antorán); 7 - Ovid Trial; 8 - MRI trial - Baylor College of Medicine, Houston, TX (Sarika Peters); 9 - Ovid STARS Trial (A Study in Adults and Adolescents With Angelman Syndrome); 10 - MRI trial at UNC, Chapel Hill, NC (Heather Hazlett); 11 - Gait trial - University of South Florida, Tampa, FL (Joe Grieco); 12 - Lena device trial - University of South Florida, Tampa, FL (Ruth Bahr); 13 - Sleep trial (Kansas); 14 – Study on the Brain Network of Angelman Syndrome, Fudan University, China (Dr Yi Wang); 15 – Disruptive Nutrition FANS/ketone trial; 16 – GeneTX KIK-AS trial; 17 – Roche & Genetech FREESIAS Endpoint Study; 18 – Roche Tangelo Clinical trial; 19 - Other
11.2.2 ANGOtherStudyOther2 Name of study/ trial Text
11.2.3 ANGOtherStudyPart Are you still participating in other study/ trial? 1 – Yes; 2 – No
11.2.4 MinocyclineTrialA Are you still participating in the Minocycline Trial (Minocycline in the Treatment of Angelman Syndrome)? 1 – Yes; 2 – No
11.2.5 MinocyclineTrialB Are you still participating in the Minocycline Trial (Study to Evaluate the Efficacy and Safety of Minocycline in Angelman Syndrome A-MANECE)? 1 – Yes; 2 – No
11.2.6 MRITrialA Are you still participating in the MRI trial at Baylor College of Medicine? 1 – Yes; 2 – No
11.2.7 MRITrialB Are you still participating in the MRI trial at UNC? 1 – Yes; 2 – No
11.2.8 GaitTrial Are you still participating in the Gait trial at the University of South Florida? 1 – Yes; 2 – No
11.2.9 LenaTrial Are you still participating in the Lena device trial at the University of South Florida? 1 – Yes; 2 – No
11.2.10 SleepTrial Are you still participating in the Sleep trial at Kansas? 1 – Yes; 2 – No
11.2.11 DisNutYN Are you still participating in the Disruptive Nutrition FANS/ketone trial? 1 – Yes; 2 – No
11.2.12 GeneTXYN Are you still participating in the GeneTX KIK-AS trial? 1 – Yes; 2 – No
11.2.13 FREESIASYN Are you still participating in the Roche & Genetech FREESIAS Endpoint Study? 1 – Yes; 2 – No
11.2.14 TangeloYN Are you still participating in the Roche Tangelo Clinical trial? 1 – Yes; 2 – No
11.2.15 BrainTrial Are you still participating in the Study on the Brain Network of Angelman Syndrome, Fudan University, China (Dr Yi Wang) 1 – Yes; 2 – No
11.2.16 NaturalHistSite Which 2011-2014 Natural History Study site? 1 - Baylor-Texas Children's, Houston, TX.  (Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Virginia Kimonis then Wen-Hann Tan); 4 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner); 5 - UCSF, San Francisco, CA (Anne Slavotinek); 6 - Children's Hospital, Cincinnati, OH (Logan Wink); 7 - Vanderbilt Children's Hosptial, Nashville, TN (Greg Barnes, then Cary Fu);
11.2.17 NaturalHistSiteNew Which 2018-current Natural History Study site? 1 - Rady Children's Hospital, San Diego, CA; 2 - Children's Hospital, Boston; 3 - Other
11.2.18 NaturalHistSiteNewOth If other, please state Text
11.2.19 NaturalHistYN Are you still participating in the Natural History Study? 1 – Yes; 2 – No
11.2.20 FolicBetaineSite Which Folic Acid/Betaine Trial site? 1 -  Baylor-Texas Children's, Houston, TX.  (Art Beaudet then Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner);
11.2.21 FolicBetaineYN re you still participating in the Folic Acid/Betaine Trial? 1 – Yes; 2 – No
11.2.22 MetafolinSite Which Metafolin Trial (Dietary Supplements for the Treatment of Angelman Syndrome) site? 1 - Baylor-Texas Children's, Houston, TX.  (Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner);
11.2.23 MetafolinYN Are you still participating in the Metafolin Trial? 1 – Yes; 2 – No
11.2.24 LevodopaSite Which Levodopa Trial site? 1 - Baylor-Texas Children's, Houston, TX.  (Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner); 5 - UCSF, San Francisco, CA (Anne Slavotinek); 6 - Children's Hospital, Cincinnati, OH (Logan Wink); 7 - Vanderbilt Children's Hospital, Nashville, TN (Greg Barnes, then Cary Fu);
11.2.25 LevodopaYN Are you still participating in the Levodopa Trial? 1 – Yes; 2 – No
11.2.26 OvidTrialSite Which Ovid Trial site? 1 - Baylor-Texas Children's, Houston, TX.  (Carlos Bacino); 2 - Rady Children's Hospital, San Diego, CA (Lynne Bird); 3 - Children's Hospital, Boston, MA (Wen-Hann Tan); 4 - Massachusetts General Hospital, Boston, MA (Ron Thibert); 5 - Greenwood Genetics Center, Greenwood, SC (Steve Skinner); 6 - Children's Hospital, Cincinnati, OH (Logan Wink); 7 - Vanderbilt Children's Hospital, Nashville, TN (Kevin Haas);
11.2.27 OvidTrialYN Are you still participating in the Ovid Trial? 1 – Yes; 2 – No
11.2.28 OvidSTARSsite Which Ovid STARS Trial (A Study in Adults and Adolescents With Angelman Syndrome) Site? Arizona California Florida Georgia 1 -  Arizona 2 -  California 3 -  Florida 4 -  Georgia 5 -  Illinois 6 -  Massachusetts 7 -  Ohio 8 -  Pennsylvania 9 -  South Carolina 10 - Tennessee 11 -  Israel
11.2.29 OvidSTARSTrialYN Are you still participating in the Ovid STARS Trial? 1 – Yes; 2 – No
11.3 Clinic attendance (ANGClinic)
No Code Question Response
11.3.1 ClinicSite Region where clinic(s) located 1 - United States of America; 2 - Other North America; 3 - South America; 4 – Europe; 5 – Asia; 6 – Africa; 7 - Oceania
11.3.2 ClinicSiteUSA Which clinic(s) in the United States of America? 1 - Seattle Children's Hospital (Seattle, Washington US); 2 - UCSF Benioff Children's Hospital (San Francisco, California US); 3 - UCLA CART Center for Autism Research and Treatment (Los Angeles, California US); 4 - Rady Children's Hospital San Diego (San Diego, California US) ; 5 - Intermountain Primary Children's Medical Center (Salt Lake City, Utah US); 6 - Children's Hospital Colorado (Aurora, Colorado US); 7 - Texas Children's Hospital (Houston, Texas US); 8 - Mayo Clinic (Rochester, Minnesota US) ; 9 - Minnesota Epilepsy Group (St. Paul, Minnesota US); 10 - Rush University Medical Center (Chicago, Illinois US); 11 - Lurie Children's Hospital Chicago (Chicago, Illinois US); 12 - Monroe Carell Jr. Children's Hospital (Nashville, Tennessee US); 13 - Geisinger Autism & Developmental Medicine Institute (Lewisburg, Pennsylvania US); 14 - NYU Langone Medical Center (New York, New York US); 15 - Weill Cornell Medical College of New York (New York, New York US); 16 - Massachusetts General Hospital (Boston, Massachusetts US); 17 - UNC Carolina Institute for Developmental Disabilities (Carrboro, North Carolina US); 18 - Miami Children's Hospital (Miami, Florida US); 19 - Other
11.3.3 WhatOtherClinicUSA Name and location Text
11.3.4 OtherClinicUSA Are you still attending this clinic? 1 – Yes; 2 – No
11.3.5 SeattleClinic Are you still attending the Seattle Children's Hospital? 1 – Yes; 2 – No
11.3.6 BenioffClinic Are you still attending the UCSF Benioff Children's Hospital? 1 – Yes; 2 – No
11.3.7 CARTClinic Are you still attending the UCLA CART Center for Autism Research and Treatment? 1 – Yes; 2 – No
11.3.8 RadyClinic Are you still attending the Rady Children's Hospital San Diego? 1 – Yes; 2 – No
11.3.9 IntermountainClinic Are you still attending the Intermountain Primary Children's Medical Center? 1 – Yes; 2 – No
11.3.10 ColoradoClinic Are you still attending the Children's Hospital Colorado? 1 – Yes; 2 – No
11.3.11 TexasClinic Are you still attending the Texas Children's Hospital? 1 – Yes; 2 – No
11.3.12 MayoClinic Are you still attending the Mayo Clinic? 1 – Yes; 2 – No
11.3.13 MinnesotaClinic Are you still attending the Minnesota Epilepsy Group? 1 – Yes; 2 – No
11.3.14 RushClinic Are you still attending the Rush University Medical Center? 1 – Yes; 2 – No
11.3.15 LurieClinic Are you still attending the Lurie Children's Hospital Chicago? 1 – Yes; 2 – No
11.3.16 MonroeClinic Are you still attending the Monroe Carell Jr Children's Hospital? 1 – Yes; 2 – No
11.3.17 GeisingerClinic Are you still attending the Geisinger Autism & Developmental Medicine Institute? 1 – Yes; 2 – No
11.3.18 LangoneClinic Are you still attending the NYU Langone Medical Center? 1 – Yes; 2 – No
11.3.19 CornellClinic Are you still attending the Weill Cornell Medical College of New York? 1 – Yes; 2 – No
11.3.20 MassachusettsClinic Are you still attending the Massachusetts General Hospital? 1 – Yes; 2 – No
11.3.21 CarolinaClinic Are you still attending the UNC Carolina Institute for Developmental Disabilities? 1 – Yes; 2 – No
11.3.22 MiamiClinic Are you still attending the Miami Children's Hospital? 1 – Yes; 2 – No
11.3.23 ClinicSiteNorthAmerica Which clinic(s) in other North American countries? 1 - Children's Hospital of Eastern Ontario (Ottowa, Canada); 2 - BC Children's Hospital; 3 Other
11.3.24 WhatOtherClinicNorthAmerica Name and location Text
11.3.25 OtherClinicNorthAmerica Are you still attending this clinic? 1 – Yes; 2 – No
11.3.26 OntarioClinic Are you still attending the Children's Hospital of Eastern Ontario (Ottowa, Canada) 1 – Yes; 2 – No
11.3.27 BritishColumbiaClinic Are you still attending the BC Children's Hospital 1 – Yes; 2 – No
11.3.28 ClinicSiteSouthAmerica Which clinic(s) in South America? 1 - Brazil Angelman Clinic; 2 - Argentina Angelman Syndrome Clinic; 3 - Other
11.3.29 WhatOtherClinicSouthAmerica Name and location the Text
11.3.30 OtherClinicSouthAmerica Are you still attending this clinic? Text
11.3.31 BrazilClinic Are you still attending the Brazil Angelman Clinic 1 – Yes; 2 – No
11.3.32 ArgentinaClinic Are you still attending the Argentina Angelman Syndrome Clinic 1 – Yes; 2 – No
11.3.33 ClinicSiteEurope Which clinic(s) in Europe? 1 - Erasmus Angelman Syndrome Center, Rotterdam, The Netherlands; 2 - St Mary’s Hospital, Manchester, UK; 3 - Edmond and Lily Safra Children's Hospital, Sheba Tel Hashomer (Tel Aviv, Israel); 4 - Other
11.3.34 WhatOtherClinicEurope Name and location Text
11.3.35 OtherClinicEurope Are you still attending this clinic? 1 – Yes; 2 – No
11.3.36 ErasmusClinic Are you still attending the Erasmus Angelman Syndrome Center, Rotterdam, The Netherlands 1 – Yes; 2 – No
11.3.37 StMaryClinic Are you still attending the St Mary’s Hospital, Manchester, UK 1 – Yes; 2 – No
11.3.38 ClinicSiteAsia Which clinic(s) in Asia? 1 - Edmond and Lily Safra Children's Hospital, Sheba Tel Hashomer (Tel Aviv, Israel); 2 - Other
11.3.39 WhatOtherClinicAsia Name and location Name and location
11.3.40 OtherClinicAsia Are you still attending this clinic? Are you still attending this clinic?
11.3.41 ClinicSiteAfrica Which clinic(s) in Africa? 1 - Edmond and Lily Safra Children's Hospital, Sheba Tel Hashomer (Tel Aviv, Israel) ; 2 - Other
11.3.42 WhatOtherClinicAfrica Name and location Text
11.3.43 OtherClinicAfrica Are you still attending this clinic? 1 – Yes; 2 – No
11.3.44 IsraelClinic Are you still attending the Edmond and Lily Safra Children's Hospital? 1 – Yes; 2 – No
11.3.45 ClinicSiteOceania Which clinic(s) in Oceania? 1 - Melbourne Royal Children’s Hospital Clinic; 2 - Development Assessment Service, St George Hospital, Kogarah, NSW; 3 - Other
11.3.46 WhatOtherClinicOceania Name and location
11.3.47 OtherClinicOceania Are you still attending this clinic? 1 – Yes; 2 – No
11.3.48 MelbourneClinic Are you still attending the Melbourne Royal Children’s Hospital Clinic? 1 – Yes; 2 – No
11.3.49 KogorahClinic Are you still attending the Development Assessment Service, St George Hospital? 1 – Yes; 2 – No
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