Rett Syndrome Registry (NCT05432349)
Rett Syndrome Real World Data Observational Registry
🩺 Plain-English Summary (8th-Grade Level)
The Rett Syndrome Registry is a longitudinal observational study of individuals with MECP2 mutations and a diagnosis of Rett syndrome. Designed together with the IRSF Rett Syndrome Center of Excellence Network medical directors, this study collects data on the signs and symptoms of Rett syndrome as reported by the Rett syndrome experts and by the caregivers of individuals with Rett syndrome. This study will be used to develop consensus based guidelines for the care of your loved ones with Rett syndrome and to facilitate the development of better clinical trials and other aspects of the drug development path for Rett syndrome.
Who can join: Review the eligibility criteria below.
Location: University of Alabama — Birmingham, Alabama
Age range: 0 Years to 99 Years
📋 "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 (19 Sites)
- University of Alabama — Birmingham, Alabama
- Children's Hospital Los Angeles — Los Angeles, California
- UCSF Benioff Children's Hospital — Oakland, California
- Rady Children's Hospital - San Diego — San Diego, California
- Children's Hospital Colorado — Denver, Colorado
- Nicklaus Children's Hospital — Miami, Florida
- Rush University Medical Center — Chicago, Illinois
- Kennedy Krieger Institute — Baltimore, Maryland
- Boston Children's Hospital — Boston, Massachusetts
- Gillette Children's Specialty Healthcare — Saint Paul, Minnesota
- Washington University in St. Louis — St Louis, Missouri
- The University of North Carolina at Chapel Hill — Chapel Hill, North Carolina
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio
- Nationwide Children's Hospital — Columbus, Ohio
- Children's Hospital of Philadelphia — Philadelphia, Pennsylvania
- Greenwood Genetic Center — Greenwood, South Carolina
- Vanderbilt Kennedy Center — Nashville, Tennessee
- Children's Health — Dallas, Texas
- Texas Children's Hospital — Houston, Texas
📞 Contact the Study Coordinator
Phone: (513) 874-3020
Email: research@rettsyndrome.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 Rett Syndrome
- Safety and Efficacy of TSHA-102 in Pediatric Females With Rett Syndrome (REVEAL Pediatric Study) — Chicago, Illinois
- Safety and Preliminary Efficacy of TSHA-102 Gene Therapy in Pediatric Females Aged >2 to <4 Years With Rett Syndrome — Birmingham, Alabama
- Technology-supported Motor Rehabilitation for People With Rett Syndrome — Bethesda, Maryland
- A Phase 1/2/3 Study of TSHA-102 Gene Therapy in Females With Rett Syndrome (REVEAL Pivotal Study) — Duarte, California
- A Novel, Regulated Gene Therapy (NGN-401) Study for Females With Rett Syndrome — Birmingham, Alabama
- A Pilot Study of an Antioxidant Cocktail vs. Placebo in the Treatment of Children and Adolescents With Rett Syndrome — Toronto, Ontario
Explore by condition: All Rett 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.