RECRUITING

The Rett Syndrome Global Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

The Rett Syndrome Global Registry

Quick Facts

Study Start:2022-01-31
Study Completion:2031-06-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04900493

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Parent/caregiver must be willing and able to provide written informed consent electronically prior to entering data into the registry.
  2. 2. Rett individuals of any age, living or deceased, must have a diagnosis of Rett syndrome and/or have a mutation in MECP2.
  1. 1. Individuals who have a genetic mutation that is inconsistent with Rett syndrome or who have a different disorder.
  2. 2. Individuals with MECP2 Duplication Syndrome

Contacts and Locations

Study Contact

Jana von Hehn, PhD
CONTACT
203-445-0041
support@rettglobalregistry.org
Jennifer Reynolds
CONTACT
support@rettglobalregistry.org

Principal Investigator

Jana von Hehn, PhD
PRINCIPAL_INVESTIGATOR
Rett Syndrome Research Trust

Study Locations (Sites)

Rett Syndrome Research Trust
Trumbull, Connecticut, 06611
United States

Collaborators and Investigators

Sponsor: Rett Syndrome Research Trust

  • Jana von Hehn, PhD, PRINCIPAL_INVESTIGATOR, Rett Syndrome Research Trust

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2022-01-31
Study Completion Date2031-06-30

Study Record Updates

Study Start Date2022-01-31
Study Completion Date2031-06-30

Terms related to this study

Keywords Provided by Researchers

  • MECP2
  • Registry
  • RSRT

Additional Relevant MeSH Terms

  • Rett Syndrome