"*" indicates required fields HiddenGroup 0 Range | Title HiddenGroup 0 Range | Title HiddenGroup 1 Range | Title HiddenGroup 2 Range | Title HiddenGroup 2.5 Range | Title HiddenGroup 3 Range | Title HiddenGroup 4 Range | Title HiddenGroup 4.5 Range | Title HiddenGroup 5 Range | Title HiddenGroup 6 Range | Title HiddenGroup 7 Range | Title HiddenGroup 8/9 Range | Title HiddenGroup 10 Range | Title HiddenGroup 11 Range | Title HiddenTotal Group Range HiddenName First Last Name (with title)* Affiliation/Company/Institution*Job Title*Email* Phone HiddenAddressMailing Address*Project sponsor (if applicable)Do you want longitudinal information if available? Do you want longitudinal information if available? Request informationData format (if applicable) Aggregate data tables De-identified data in .csv file format Other request: Assistance with recruitment Identifiable or re-identifiable data Linkage with registry Other (please describe below) Inclusion/ Exclusion criteria if any (e.g. individuals born after 1970):Brief description of request (in 250 words or less, explain the purpose of your request and what you hope to achieve):Project InformationProject Title Aims/ ObjectivesTime frame for project completion Project description1000 words max. Include: - Background - Methods/ analysis - Source of funding - Reason for registry access - Time frame for project completion: Has an Institutional Review Board (IRB) or Human Research Ethics Committee (HREC) reviewed this project? Yes No IRB/ HREC name IRB/ HREC approval number (if applicable) Funding status and source (if applicable)Please attach copies of the following IRB/ Ethics status or approval letter Investigator biography and CVs Other requestsAnticipated dates of recruitment (if relevant) Clinicaltrials.gov status (if relevant) Please attach copies of the followingParticipant information and consent formsMax. file size: 2 MB.Protocol summary (lay language)Max. file size: 2 MB.Recruitment materials (if applicable)Max. file size: 2 MB.If you have any questions about this form or would like to discuss your request prior to submission, please contact the data curator, Dr Megan Tones at curator@angelmanregistry.infoPlease select modules that you would like access to: Module 1 Newborn and infancy history Module 2 History of diagnosis and results Module 2.5 6 month check up Module 3 Illnesses and medical problems Module 4 Medical history Module 4.5 Communication Module 5 Behaviour and development Module 6 Epilepsy Module 7 Medications Module 8/9 Sleep/ The sleep disturbance scale for children Module 10 Pathology and Diagnostics Module 11 Clinical trials and clinic attendanc Module 0 - Demographics Please complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Child/ adult detailsI would like information on: Country of residence State/ providence of residence Year of birth Sex Genotype/ diagnosis Module 1Please complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Child resided with caregiverI would like information on: Whether the child resided with the caregiver in the first 4 weeks of life Whether the child resided with the caregiver in the first 1-12 months of life Newborn : FeedingI would like information on: How child/ adult was fed during infancy Age breastfeeding stopped Age bottle feeding stopped Feeding difficulties experienced Was assistance used at any time in their infancy (e.g. lactation support, syringes, spooning in pumped milk)? Feeding difficulties: refusal to nurse Could not latch Ineffective suck Biting Irritable in association with feeding Newborn : Health and BehaviouralI would like information on: Vomiting Arching Show excessive movements Difficulties maintaining or regulating proper body temperature Difficulty sleeping Description of child’s crying Other behavioural or developmental concerns Other health problems Infancy : TemperamentI would like information on: Happy in the first 12 months of their life Placid in the first 12 months of their life Easy going in the first 12 months of their life Affectionate in the first 12 months of their life Infancy : FeedingI would like information on: Difficulties with suck/swallow Difficulties with failure to gain weight Reflux/gastro/oesophageal problems Difficulties with transitioning to solid food Infancy : RespiratoryI would like information on: Difficulties with asthma/wheezing Difficulties with coughing Difficulties with pneumonia Difficulties with bronchitis Infancy : Other Health and BehaviouralI would like information on: Difficulty sleeping Description of child’s crying Other behavioural or developmental concerns Other health problems Module 2Please complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module History of DiagnosisI would like information on: Age at diagnosis Current age of the individual with Angelman Syndrome in years Caregiver suspected Angelman syndrome prior to the official diagnosis Who made the diagnosis? History that led to the Angelman Syndrome syndrome diagnosis Misdiagnosis prior to Angelman syndrome Current dual diagnosis Other current diagnoses the individual has received ResultsI would like information on: Had a genetic test for Angelman Syndrome Received a clinical diagnosis of Angelman Syndrome Parent knowledge of type of tests were performed Type of test performed Test result Module 2.5 – 6 month check upPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Medical screeningI would like information on: Age in years Height in cm Weight in kg Changes in child/ adult in last 6 monthsI would like information on: Epilepsy - seizure changes Medication - medication changes Therapy - therapy changes Hospitalisations - new hospitalisations ClinicalI would like information on: Pathology or testing Started or stopped taking part in clinical trials or studies Attendance at Angelman clinics Hospitalisations - new hospitalisations Module 3 – Illnesses or Medical ProblemsPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Medical screeningI would like information on: Baseline data Follow up data (if available) Gastrointestinal ProblemsI would like information on: Gastroesophageal reflux Current status of gastroesophageal reflux Age at diagnosis Severity of disease Medical treatment required Surgical treatment required Age at recurrence Severity when recurring Medical treatment for recurring Surgical treatment for recurring Age when resolved Constipation Current status of constipation Severity during episodes Constipation management Vomiting with feeds Current status of vomiting with feeds Medical treatment required Surgical treatment required Gagging after 12 months Current status of gagging Situations where gagging occurs Throat/ Respiratory ProblemsI would like information on: Pneumonia Current status of pneumonia Pneumonia related to aspiration Number of episodes of pneumonia per year Severity of pneumonia episodes Strep throat Current status of strep throat Number of episodes of strep throat Severity of strep throat episodes Musculoskeletal ProblemsI would like information on: Toe walking Current status of toe walking Treatments used Tight heel cords Current status of tight heel cords Treatments used Curvature of the spine Treatments used Age at diagnosis Age when bracing was commenced Dental problems Current status of dental problems Number of fillings Nutrition and FeedingI would like information on: Overweight Classified as obese Current status of obesity Age of onset Food refusal/ failure to thrive over 12 months of age Current status of failure to thrive Age of onset Duration of failure to thrive Tube feeding after 12 months of age Current status of tube feeding Type of tube feeding used Duration of tube feeding Reason of placement How they are tube fed Child/ adult’s current height Child/ adult’s current weight BMI Activity level Food intake Food seeking behaviours Sensory ProblemsI would like information on: Strabismus Current status of strabismus Treatments used Treatment of recurrences Cortical visual impairment Current status of cortical visual impairment Ear infections (otitis media) Current status of otitis media Number of episodes per year Ever had hearing tested Hearing test results Neurological ProblemsI would like information on: Auditory processing disorders Current status of auditory processing disorders Cortical myoclonus (tremors) Current status of cortical myoclonus Age at onset Severity Neurological ProblemsI would like information on: Diagnosed allergies Current status of allergies Types of allergies Intolerances Current status of intolerances Types of intolerances Other Medical ConditionsI would like information on: Other medical conditions that have not been covered Current status of condition Age of onset Severity of condition Frequency of recurrence Module 4 – Hospitalisations and Surgical ProceduresPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Medical historyI would like information on: Whether the child/ adult ever been hospitalised Whether the child/ adult had any surgical procedures Number of surgeries Whether the child/ adult had any anesthesias Number of anesthesias Details of hospitalisation/ surgeryI would like information on: Child/ adult's age at admission Hospitalisation reason Number of days in hospital Level of care Module 4.5 – CommunicationPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Longitudinal screeningI would like information on: Baseline data Follow up data (if available) Speech, language and communicationI would like information on: All forms of language communication used Number of words, or word approximations How often do they use words or word approximations Age first spoke Most effective verbal language communication Best ability to respond to requests Methods of communication with others Use of communication methods/ systemsI would like information on: Spoken words Gestures Signing Visual pictures Eye tracking devices Low tech AAC (light tech or paper based, e.g. PODD books, core vocab boards, aided language displays) Mid tech (big mark switches, tech talks or voice output) High tech AAC (e.g. Dynamic display, iPad, Novachat Tobii) Assisted and Augmented Communication (AAC) UsageI would like information on: Child/adult participated in speech-language therapy before Parent heard of the Communication Matrix (CM) tool CM ID, administration date, total score, percentage Child/ adult uses a form of Augmentative and Alternative Communication (AAC) If not used AAC, interest in using AAC with your child/ adult If denied a form of AAC therapy, reason given for this Where does child/ adult use AAC Frequency of use of AAC to communicate at Home Type of AAC child/ adult uses to communicate at home Frequency of use of AAC to communicate at School Type of AAC child/ adult uses to communicate at school Frequency of use of AAC to communicate at Speech Therapy Type of AAC child/ adult uses to communicate at speech therapy How parent heard about AAC How long after diagnosis started using AAC For what function of communication does child use AAC with others Child’s use of an electronic communication device for other purposes than AAC Number of hours they spend using the device for AAC purposes on a typical day Number of hours they spend using the device for other purposes than AAC on a typical day Assisted and Augmented Communication (AAC) Usage by OthersI would like information on: Who else uses the AAC to communicate with child/ adult Did caregiver receive training on how to use AAC with child/ adult Details of who provided the AAC training to caregiver Amount of training caregiver had on using AAC Caregiver confidence/comfort in using AAC with child/ adult Module 6 – EpilepsyPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Seizure historyI would like information on: Child/ adult experienced any seizures Child/ adult’s current seizure status Parent opinion of the source of breakthrough seizures Age of first observed seizure activity Type of seizure activity Parent opinion of the seizure trigger Medication given Hospitalisation required Ongoing medication prescribed Seizure types: AtonicI would like information on: Whether child experiences atonic seizures Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: Tonic, clonic or tonic-clonic seizureI would like information on: Whether child experiences tonic, clonic or tonic-clonic seizures Seizure type focal or generalised Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: MyoclonicI would like information on: Whether child experiences myoclonic seizures Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: Cluster motor seizuresI would like information on: Whether child experiences cluster motor seizures Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: Absence seizuresI would like information on: Whether child experiences absence seizures Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: Cluster non-motor seizuresI would like information on: Whether child experiences a cluster non-motor seizures Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: Epileptic spasmsI would like information on: Whether child experiences epiletic spasms Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: Convulsive status epilepticusI would like information on: Whether child experiences convulsive status epilepticus Seizure type focal or generalised Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: Non-convulsive status epilepticusI would like information on: Whether child experiences non-convulsive status epilepticus Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Seizure types: UnknownI would like information on: Whether child experiences seizures of unknown type Age of onset Currently free from this seizure type Experienced periods of freedom from seizures Longest period of freedom from seizures Frequency of seizures Number of seizures in this timeframe Parent perception of seizure triggers Medicated for seizures Hospitalised for seizures Module 7 – Medications, interventions and therapiesPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Medications/ interventions and therapy useI would like information on: Child/ adult currently taking medications/ interventions Child/ adult tried any medication/ interventions they are no longer using Child/ adult ever taken part in any therapies Medications/ interventions no longer usedI would like information on: Medications/ interventions child/ adult is currently taking Reason for using this drug/ intervention Child/ adult’s age when medication/ intervention started Frequency of medication given Dosage Time medication given Therapy servicesI would like information on: Therapy services your child/ adult is currently using Parent participated in short or intensive courses about delivering therapies to child/ adult Therapy services: PhysicalI would like information on: Currently participating in physical therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Speech therapyI would like information on: Currently participating in speech therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Augmentative and Alternative Communication (AAC)I would like information on: Currently participating in AAC therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Occupational therapyI would like information on: Currently participating in occupational therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: PhysiotherapyI would like information on: Currently participating in physiotherapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: HippotherapyI would like information on: Currently participating in hippotherapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: HydrotherapyI would like information on: Currently participating in hydrotherapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Music therapyI would like information on: Currently participating in music therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Art therapyI would like information on: Currently participating in art therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Pet therapyI would like information on: Currently participating in pet therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Behavioural therapyI would like information on: Currently participating in behavioural therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Adaptive sportsI would like information on: Currently participating in adaptive sports Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Play therapyI would like information on: Currently participating in play therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Chiropractic therapyI would like information on: Currently participating in chiropractic therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Dietary therapyI would like information on: Currently participating in dietary therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Massage therapyI would like information on: Currently participating in massage therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Therapy services: Other therapyI would like information on: Currently participating in other therapy Started and stopped therapy Age started therapy Age stopped therapy Frequency of attending current therapy Frequency of attending prior therapy Duration of current therapy sessions Duration of prior therapy sessions Module 5 – Behaviour and developmentPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Longitudinal screeningI would like information on: Baseline data Follow up data (if available) Types of muscle toneI would like information on: Description of child/ adult’s muscle tone Description of child/ adult’s muscle tone in his/her trunk Description of child/ adult’s muscle tone in his/her limbs Current Development: General ImpressionsI would like information on: Child/ adult's ability to learn Skills lost Motor skills lost? Current Development: Gross Motor functionI would like information on: All types of mobility used Form of support used Gait compared to typically developing age matched peers Child/ adult's gait Stability of child/ adult’s gait Gross Motor Function - please describe your child/adult's ability to do the followingI would like information on: Roll across the floor - ability/ frequency/ age Sit up - ability/ frequency/ age Crawl - ability/ frequency/ age Shuffles or scoots when seated - ability/ frequency/ age Stand up - ability/ frequency/ age Walk (unassisted) - ability/ frequency/ age Run - ability/ frequency/ age Climb stairs - ability/ frequency/ age Jump - ability/ frequency/ age Fine Motor Function - please describe your child/adult's ability to do the followingI would like information on: Hold things, such as a stuffed toy - ability/ frequency/ age Point to indicate things - ability/ frequency/ age Transfer things between hands - ability/ frequency/ age Hold a pencil and scribble - ability/ frequency/ age Hold a pencil and draw - ability/ frequency/ age Catch a large ball - ability/ frequency/ age Catch a small ball - ability/ frequency/ age Adaptive Skills - Dressing - please describe your child/adult's ability to do the followingI would like information on: Put up their hands to help dress - ability/ frequency/ age Take off simple clothes such as socks - ability/ frequency/ age Take off complex clothes such as shirts - ability/ frequency/ age Do up velcro - ability/ frequency/ age Do up buttons or zippers - ability/ frequency/ age Dress themselves, even if not always right (eg buttons not lined up, clothes back to front) - ability/ frequency/ age Dress themselves without assistance - ability/ frequency/ age Chooses clothes appropriately (eg warm clothes if cold) Adaptive Skills - Toileting and Continence - please describe your child/adult's ability to do the followingI would like information on: Is continent (toilet trained) - ability/ frequency/ age Showed indications of toileting behaviours - ability/ frequency/ age Timed to go to the toilet (eg taken to the toilet every 3 hours) - ability/ frequency/ age Indicates when they want to go to the toilet - ability/ frequency/ age Continent of stools (bowel movements) - ability/ frequency/ age Continent of urine (dry) during the day - ability/ frequency/ age Continent of urine (dry) at night - ability/ frequency/ age Adaptive Skills - Eating - please describe your child/adult's ability to do the followingI would like information on: Textures or tastes child/ adult really doesn’t like Examples of textures/ tastes they don’t like Fussy with their food - frequency/ age Hold a bottle - ability/ frequency/ age Chew all textures - ability/ frequency/ age Finger feed - ability/ frequency/ age Hold a spoon and feed - ability/ frequency/ age Use a fork - ability/ frequency/ age Feed self using fingers or utensils - ability/ frequency/ age Hold a cup or tumbler and drink - ability/ frequency/ age Need support with feeding from a parent/caregiver - frequency/ age Indicates that they are full - ability/ frequency/ age Use supplementation in the form of additional formulas - frequency/ age Preferred ActivitiesI would like information on: Child/ adult’s preferred activities BehaviouralI would like information on: Rating of child/ adult’s behaviour on a scale of 1 to 10 in comparison to age matched typical peers Repetitive behaviours such as slapping the wall Unusual movements that are repetitive: Focal hand movements Whole body movements Mouthing or chewing Agitation in new situations Fear of strangers Will socialise with anyone Fear of new situations Anxious behaviours When they show these behaviours Type of anxious behaviours Oppositional behaviours, e.g. refusing to do something Aggressive behaviours: biting Hair pulling Hitting Grabbing Hyperactivity Poor attention Good concentration on things he/she enjoys such as iPad games Fascination with water Impulsivity – such as running out on road/hitting out Frequent smiling at nothing in particular Frequent appropriate smiling Spontaneous laughter at nothing in particular Night time laughter Appropriate laughter Separation anxiety Fear of being left at school or in care situations Self harming behaviour: Skin picking Head banging Self hitting Module 8 – SleepPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Longitudinal screeningI would like information on: Baseline data Follow up data (if available) General SleepingI would like information on: Rating of child’s sleep on a scale of 1-10 Age child/ adult first slept through the night Does child/ adult have a regular sleeping pattern Difficulty going to sleep on his/her own Waking during the night Waking up early Parent/caregiver needed to be there when they go to sleep Experience nocturnal waking (waking during the night) Requires an adult to co sleep to get to sleep Child/ adult had a modified or special needs bed for sleeping Sleep Disturbance Scale for Children (SDSC)I would like information on: How many hours of sleep does your child have per night? How long after going to bed does your child usually fall asleep? Your child does not like going to bed Your child has difficulty in getting to sleep at night Your child feels anxious or afraid when falling asleep Your child startles or jerks parts of the body while falling asleep Your child shows repetitive actions such as rocking or head banging while falling asleep Your child has very strange dreams while falling asleep Your child sweats a lot while falling asleep Your child wakes up more than twice per night After waking up in the night, your child has trouble falling asleep again 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 Your child has trouble breathing during the night Your child gasps for breath or is unable to breathe during sleep Your child snores Your child sweats a lot during the night You have seen your child sleep walking You have seen your child verbalising in his/her sleep Your child grinds his/her teeth during sleep 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 Your child has nightmares which he/she can’t remember the next day Your child is hard to wake up in the morning Your child wakes up in the morning feeling tired Your child sometimes feels unable to move when waking up in the morning Your child is tired during the day Your child falls asleep suddenly in unusual situations Disorders of initiating and maintaining sleep Sum of items 1,2,3,4,5,10,11 Sleep Breathing Disorders Sum of items 13,14,15 Disorders of arousal Sum of items 17,20,21 Sleep-Wake Transition Disorders Sum of items 6,7,8,12,18,19 Disorders of excessive somnolence (increased sleepiness) Sum of items 22,23,24,25,26 Sleep Hyperhydrosis (sweating in sleep) Sum of items 9,16 Total score Sum of factor scores General SleepingI would like information on: Day of the week Time to bed Time to sleep Number of times they woke Longest time awake during the night (in minutes) e.g 10 mins Wake up time Daytime naps number Duration of daytime naps (minutes) Module 10a – Change in Seizure ActivityPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Changes in seizure statusI would like information on: Current age Type of seizures experienced Current seizure status Parental perception of the source of breakthrough seizures Frequency of seizures Number of seizures they typically have in this time frame Seizure triggers Medication given Hospitalisation required Ongoing medication prescribed Module 10b – New Hospitalisations or Surgical ProceduresPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Details of Hospitalisation/SurgeryI would like information on: Child/ adult's age at admission Hospitalisation reason Number of days in hospital Level of care Module 10c – New Medication or Changed DosePlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Medication/ Intervention Started/ ChangedI would like information on: Name of medication Reason for using drug/intervention Child/ adult's age when medication/ intervention was started or changed Frequency of medication given Dosage Time medication given Module 10d – Stopped MedicationPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Stopped medication/ interventionI would like information on: Medication child/ adult stopped Reason for using this drug/intervention Reason for stopping this drug/intervention Age when the medication/intervention was stopped Module 10e – New Therapy Service or Changed Frequency or DurationPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module New TherapyI would like information on: Therapy services child/adult has changed or started Age started therapy Frequently of attendance at this service Duration of typical session Module 10f – Stopped Therapy ServicePlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Stopped Therapy ServiceI would like information on: Therapy service/s child/adult stopped Age stopped therapy Frequently of attendance at this service Duration of typical session Module 10g – Clinical TrialsPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Clinical TrialsI would like information on: Name of study/ trial Child/ adult still participating in the study/ trial Module 10h – Clinic VisitPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Clinical TrialsI would like information on: Region where clinic(s) located Name of clinic Child/ adult still attending this clinic Module 10i – Pathology and DiagnosticsPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Pathology and diagnosticsI would like information on: Test type Test date (DD-MM-YYYY) Reason for investigation Results Module 11 – Clinical trials and studiesPlease complete the form below, then click Next. You can save your progress and resume later at any time.Module Option I want all data in this module I want specific data in this module Clinical trials and research studiesI would like information on: Child/ adult ever involved in research studies/ clinical trials Ever attended an Angelman syndrome clinic Study participationI would like information on: Name of study/ trial Is the child/ adult still participating in the study/ trial Clinic attendanceI would like information on: Region where clinic located Name of clinic Is the child/ adult still attending this clinic PreviousNext
