RecruitingNCT04900493

The Rett Syndrome Global Registry

Sponsor

Rett Syndrome Research Trust

Enrollment

5,000 participants

Start Date

Jan 31, 2022

Study Type

OBSERVATIONAL

Conditions

Rett Syndrome

Summary

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.

Eligibility

Inclusion Criteria2

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

Exclusion Criteria2

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

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