International Registry of Children with Angelman Syndrome

Project Information

International Registry of Children with Angelman Syndrome

The first patient registry to bring together clinicians and parents from around the World
The first patient registry to bring together clinicians and parents from around the world. Strong community: the project is supported by three patient funds Parents’ community: over 250 active families helping new users enter data. Independent registry: the data can be anonymised, allowing any international scientist or doctor to view it
  • 10 000 children with Angelman syndrome
  • More participated countries
  • More involved pharma
  • Partnership with other global Angelman societies
  • collecting RWE/RWD data
Project participation

Project registration

Project registration is available to specialists of the healthcare system of the Russian Federation

For doctor

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For patient

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Angelman syndrome society


number of patients


number of medical specialist


number of
health care facilities



  • Patient registries, broken down by different nosologies allow the doctor to improve quality of treatment and reduce the risk of adverse events in everyday practice. They also remind the patient to follow prescribed treatment and help public health officials better understand prevalence of any disease as well as demand for expensive treatment within selected territory

    • - Service software located in the international Data Processing Centre. Data of patients and doctors is subject to protection of the required security classification
    • - Periodic data backup
    • - Threat modelling protocol and all required internal documents that regulate collecting, processing and storing personal data
    • - Access rights differentiation for different user categories
    • - Procedures meet GDRP standards
    • - When in “Registration” section, select the right type of user (Patient/Doctor) and fill in all the presented fields.
    • - Then the system will send a letter with a link to the stated e-mail address to confirm the e-mail address
    • - If You registered as a Patient, You can create patient files for yourself and Your relatives in the personal account, register these files within different registries You need and start completing specialised questionnaires to assess health over time. The system also allows to find a doctor or connect the created patient file to the profile of a specialist You already know for remote monitoring and consulting.
    • - If You have registered as a Doctor (Specialist), You will need to wait for the account and the data provided to be verified by ONE HEALTH internal services. If verification is successful, the system administrator will provide full access to functionality of Your personal account within 12—24 hours.

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