The Rett Syndrome Global Registry

Recruiting now

Conditions studied: Rett Syndrome

In brief

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.

Key facts

Study ID

NCT04900493

Run by

Rett Syndrome Research Trust

People needed

5000

Starts

2022-01-31

Expected to finish

2031-06-30

Last updated by the study team

2026-02-17

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

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

Where it is running

• Rett Syndrome Research Trust — Trumbull, Connecticut, United States (enrolling)

Full record on ClinicalTrials.gov

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