Recruiting

Observational Study

Sponsor:

Rett Syndrome Research Trust

Code:

NCT04900493

Conditions

Rett Syndrome

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

Study Details

Brief 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.

Conditions

Rett Syndrome

Study ID

NCT04900493

Start date

Jan 31, 2022

Status verified date

Feb, 2026

Completion date

Jun 30, 2031

Anticipated

Primary completion date

Jun 30, 2031

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 0+

Healthy Volunteers: Not accepted

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

Study Design

Enrollment

5000 participants

Anticipated

Interventions and Outcome Measures

Primary outcome measure

  • Frequency of genetic mutation types and clinical diagnoses. [ Time Frame: 1 year ]
  • Caregiver report of developmental milestone achievement over time. [ Time Frame: 5 years ]
  • Caregiver report of symptom burden and development history over time. [ Time Frame: 5 years ]
  • Caregiver report of composition and frequency of co-morbidities over time. [ Time Frame: 5 years ]
  • Caregiver report of the composition and frequency of medication and over-the-counter treatments over time. [ Time Frame: 5 years ]
  • Caregiver report of the composition and frequency of physician specialty utilization and care received at Rett Clinics over time. [ Time Frame: 5 years ]
  • Caregiver report of the composition of the barriers to clinical trial participation over time. [ Time Frame: 5 years ]

Central Contacts and Locations

Central contacts

Jana von Hehn, PhD

203-445-0041support@rettglobalregistry.org

Jennifer Reynolds

support@rettglobalregistry.org

Locations

Rett Syndrome Research Trust

Recruiting

Trumbull, Connecticut, United States, 06611

Contacts

Jana von Hehn, PhD

support@rettglobalregistry.org

Jenny Reynolds

support@rettglobalregistry.org

More Information

Sponsor

Rett Syndrome Research Trust

Last update posted

Feb 17, 2026

Last verified

Feb, 2026

Keywords

  • MECP2
  • Registry
  • RSRT

Trial information was received from ClinicalTrials.gov and was last updated on 2026-09-08. This information was provided to ClinicalTrials.gov by Rett Syndrome Research Trust on 2026-02-17.