Home › Rett Syndrome › NCT04900493

The Rett Syndrome Global Registry

Who can join

All ages · All sexes

Inclusion Criteria:

1. Parent/caregiver must be willing and able to provide written informed consent electronically prior to entering data into the registry.
2. Rett individuals of any age, living or deceased, must have a diagnosis of Rett syndrome and/or have a mutation in MECP2.

Exclusion Criteria:

1. Individuals who have a genetic mutation that is inconsistent with Rett syndrome or who have a different disorder.
2. Individuals with MECP2 Duplication Syndrome

About the study

The Rett Global Registry is a fully remote, global, caregiver-reported registry to collect information about caring for a loved one with Rett syndrome. In addition, caregivers have the ability to track and graph their loved one's symptoms and care strategies over time, store information for central access, and opt-in to complete medical record consolidation and summary. Qualified researchers and therapeutic developers may request access to de-identified aggregate information to further Rett research, or assist with clinical development planning to facilitate and expedite more effective clinical trials.

Sponsor: Rett Syndrome Research Trust · Participants: 5,000 · Started: Jan 31, 2022

Contact the study team

• Jana von Hehn, PhD · Phone: 203-445-0041

Official record on ClinicalTrials.gov — NCT04900493

Locations in the U.S.

Conditions

• Rett Syndrome

From ClinicalTrials.gov, data retrieved Oct 2, 2026. Each study sets its own eligibility; the study team decides who can join.