RECRUITING WORLDWIDE: Rett Syndrome Global Registry
Posted: Thu Sep 03, 2026 10:49 pm
Status: RecruitingProject: Rett Syndrome Global Registry
Registry number: NCT04900493
Participation: Fully remote and worldwide
Who can join: Caregivers of a living or deceased person of any age with Rett syndrome and/or an MECP2 variant
What is the registry?
This caregiver-reported registry, run by the Rett Syndrome Research Trust, collects information about symptoms, care and lived experience. Families can track information over time and may opt into medical-record consolidation. De-identified information may support research and clinical-trial development.
Contact: support@rettglobalregistry.org — +1 203 445 0041
Official study record: https://clinicaltrials.gov/study/NCT04900493
Information checked 3 September 2026. Read the consent and privacy information before joining any registry, and contact the registry team with questions about how information is stored or used.
Registry number: NCT04900493
Participation: Fully remote and worldwide
Who can join: Caregivers of a living or deceased person of any age with Rett syndrome and/or an MECP2 variant
What is the registry?
This caregiver-reported registry, run by the Rett Syndrome Research Trust, collects information about symptoms, care and lived experience. Families can track information over time and may opt into medical-record consolidation. De-identified information may support research and clinical-trial development.
Contact: support@rettglobalregistry.org — +1 203 445 0041
Official study record: https://clinicaltrials.gov/study/NCT04900493
Information checked 3 September 2026. Read the consent and privacy information before joining any registry, and contact the registry team with questions about how information is stored or used.