A Natural History Study of Angelman Syndrome (NCT07417137)
A Longitudinal Natural History Study of Adults and Children With Angelman Syndrome
🩺 Plain-English Summary (8th-Grade Level)
The goal of this observational study is to learn about the natural progression of Angelman syndrome (AS) in children and adults with a confirmed genetic diagnosis of AS. The main questions it aims to answer are: * How do developmental skills, such as communication, motor abilities, and adaptive behaviors, change over a 1-year period in people with AS? * Are there specific patterns in brain activity or sleep that are associated with changes in AS symptoms over time? Participants will: * Attend 3 in-person and 2 virtual study visits over 1 year for assessments. * Complete tests and questionnaires about development, behaviors, and sleep with the help of their caregivers. * Undergo electroencephalograms (EEGs) to measure brain activity and wear a sleep-monitoring device at home (to collect actigraphy data).
Who can join: Review the eligibility criteria below.
Location: MGH Lurie Center for Autism — Lexington, Massachusetts
Age range: 1 Year
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (1 Sites)
- MGH Lurie Center for Autism — Lexington, Massachusetts
📞 Contact the Study Coordinator
Phone: (781) 860-1711
Email: MGHGLOW-AS@mgb.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 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.
More studies in Angelman Syndrome
- HALOS: A Safety, Tolerability, Pharmacokinetics and Pharmacodynamics Study of Multiple Ascending Doses of ION582 in Participants With Angelman Syndrome — San Diego, California
- Phase 3 Efficacy and Safety Study of GTX-102 in Pediatric Subjects With Angelman Syndrome (AS) — Los Angeles, California
- Angelman Syndrome Natural History Study — Los Angeles, California
- A Phase 1/2 Study of the Safety and Efficacy of MVX-220 in Angelman Syndrome — Los Angeles, California
- BEACON - Phase III Clinical Study of Rugonersen in Angelman Syndrome. — San Diego, California
Explore by condition: All Angelman Syndrome clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.