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Angelman Syndrome Natural History Study

This observational study aims to better understand Angelman Syndrome over time in children and adults. Researchers will collect information on medical history and use specific tests like the Vineland Adaptive Behavior Scales, 3rd edition, and the Bayley Scales of Infant and Toddler Development, 4th edition, to measure development and behavior. The goal is to gather data that will be helpful for future clinical trials and ultimately improve care for individuals with Angelman Syndrome. You may be able to join if you have a molecular diagnosis of Angelman Syndrome and do not have another condition affecting neurodevelopment. The study plans to enroll about 300 participants, but its current recruitment status is unclear.

Study design
This is an observational study, meaning no interventions are given. It plans to include about 300 participants.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Information will be collected throughout the study, which is expected to average 1 year.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT04507997

Angelman Syndrome Natural History Study

Recruiting
Not specifiedAll AgesObservational
Boston Children's Hospital
~300 participants
Updated 2025-04-03 on ClinicalTrials.gov

At a glance

Recruiting sites
10 of 11 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Medical History
Measured over Through study completion, an average of 1 year
+3 more outcomes measured

Conditions

Angelman Syndrome

Explore related trials

Angelman Syndrome

Where it's being run

11 sites across 10 states
California2
Colorado1
Georgia1
Illinois1
Massachusetts1
North Carolina1
Tennessee1
Alberta1

Study leadership

  • Wen-Hann Tan, BMBS · STUDY_CHAIR · Boston Children's Hospital

Who to contact

Wen-Hann Tan, BMBS
[email protected]
617-355 6394
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Eligibility criteria

Inclusion

Molecular diagnosis of Angelman syndrome

Exclusion

Presence of another condition, unrelated to Angelman syndrome, that affects neurodevelopment

What this trial measures

  • Medical HistoryThrough study completion, an average of 1 year

    Includes various medical complications, including seizure history

  • Vineland Adaptive Behavior Scales, 3rd editionThrough study completion, an average of 1 year

    Developmental and Adaptive skills

  • Bayley Scales of Infant and Toddler Development, 4th editionThrough study completion, an average of 1 year

    Developmental skills

  • Observer-Reported Communication Ability (ORCA) MeasureThrough study completion, an average of 1 year

    Communication skills