RECRUITING: IRSF Rett Syndrome Registry – United States

[admin]

Status: RecruitingProject: Rett Syndrome Registry
Registry number: NCT05432349
Country: United States
Participants: People aged 0–99 years with Rett syndrome or an MECP2 variant

What is the registry?
This longitudinal observational study was developed with medical directors from the International Rett Syndrome Foundation’s Centers of Excellence Network. Clinicians and caregivers contribute information about Rett signs and symptoms to support care guidelines, clinical-trial design and treatment development.

Recruiting sites are listed across Alabama, California, Colorado, Florida, Illinois, Maryland, Massachusetts, Minnesota, Missouri, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee and Texas.

Contact: research@rettsyndrome.org — +1 513 874 3020
Official study record: https://clinicaltrials.gov/study/NCT05432349

Information checked 3 September 2026. Ask the study team about consent, privacy, visits and eligibility before enrolling.