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
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
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
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,
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?
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
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
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
For Professionals & Researchers
For Caregivers
The Global Angelman Syndrome Registry is a project designed for individuals diagnosed with Angelman syndrome and those working towards research and treatments.
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