The Rett Syndrome Global Registry
ConditionRett Syndrome
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorRett Syndrome Research Trust
About this trial
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 criteria
Qualifiers
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.
Disqualifiers
Individuals who have a genetic mutation that is inconsistent with Rett syndrome or who have a different disorder.
Individuals with MECP2 Duplication Syndrome
Trial design
Treatments tested in this trial
- Not listed
Trial groups
No trial groups listed
Sponsors and collaborators
Rett Syndrome Research Trust
Lead sponsor
Baylor College of Medicine
Collaborator
Vanderbilt University Medical Center
Collaborator
Children's Hospital of Philadelphia
Collaborator
Rush University
Collaborator
Boston Children's Hospital
Collaborator
RTI International
Collaborator
Source ClinicalTrials.gov