A global registry for caregivers of individuals with Rett syndrome
The Rett Syndrome Global Registry
This study is creating a platform for caregivers of people with Rett syndrome to share their experiences and track care strategies to help improve understanding and treatment of the condition.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | All |
| Sponsor | Rett Syndrome Research Trust Academic / other |
| Locations | 1 site (Trumbull, Connecticut) |
| Trial ID | NCT04900493 on ClinicalTrials.gov |
What this trial studies
The Rett Syndrome Global Registry is a remote, caregiver-reported platform designed to collect and analyze data about the experiences of those caring for individuals with Rett syndrome. Caregivers can track symptoms, care strategies, and access aggregate data to enhance their understanding and management of the condition. The registry aims to support research and therapeutic development by providing qualified researchers with de-identified data to improve outcomes for those affected by Rett syndrome. This initiative seeks to consolidate medical records and facilitate better communication between caregivers and healthcare providers.
Who should consider this trial
Good fit: Ideal candidates for this registry include caregivers of individuals diagnosed with Rett syndrome or those with a mutation in the MECP2 gene.
Not a fit: Patients with genetic mutations inconsistent with Rett syndrome or those diagnosed with MECP2 Duplication Syndrome may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved care strategies and therapeutic developments for individuals with Rett syndrome.
How similar studies have performed: Other similar registries have shown success in enhancing understanding and treatment of rare disorders, indicating a promising approach.
Eligibility criteria
Show full inclusion / exclusion criteria
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
Where this trial is running
Trumbull, Connecticut
- Rett Syndrome Research Trust — Trumbull, Connecticut, United States (Recruiting)
Study contacts
- Principal investigator: Jana von Hehn, PhD — Rett Syndrome Research Trust
- Study coordinator: Jana von Hehn, PhD
- Email: support@rettglobalregistry.org
- Phone: 203-445-0041
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.