🏛️ Verified NIH Record • Updated 2025-03-30
Angelman Syndrome Natural History Study (NCT04507997)
🟢 Recruiting Interventional Protocol 📊 Observational Clinical Research Sponsor: Boston Children's Hospital
🩺 Plain-English Summary (8th-Grade Level)
The goal of this study is to conduct a prospective, longitudinal natural history study of children and adults with Angelman Syndrome using investigator-observed and parent-reported outcome measures to obtain data that will be useful for future clinical trials.
Who can join: To join this study, participants generally need to meet the listed inclusion criteria (1 items) and avoid the listed exclusions (2 items).
Location: Cedars-Sinai Guerin Children's — Los Angeles, California
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistCheck every box below. If you can check all of them, you may meet the study's basic screening requirements (final eligibility is confirmed by the site team).
Usually NOT eligible if any of the following apply:
- Exclusion Criteria:
- Presence of another condition, unrelated to Angelman syndrome, that affects neurodevelopment
🔍 Extracted verbatim from the official NIH eligibility criteria. Always confirm with the study coordinator.
📍 All Participating Trial Locations (11 Sites)
- Cedars-Sinai Guerin Children's — Los Angeles, California
- Rady Children's Hospital, San Diego — San Diego, California
- Children's Hospital Colorado, Anschutz Medical Campus — Aurora, Colorado
- Emory University School of Medicine — Atlanta, Georgia
- Rush University Children's Hospital — Chicago, Illinois
- Boston Children's Hospital — Boston, Massachusetts
- The Carolina Institute for Developmental Disabilities — Carrboro, North Carolina
- Monroe Carell Jr. Children's Hospital at Vanderbilt — Nashville, Tennessee
- Alberta Children's Hospital — Calgary, Alberta
- BC Children's Hospital — Vancouver, British Columbia
- Children's Hospital of Eastern Ontario — Ottawa, Ontario
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.