The Rett Syndrome Global Registry

Launched by RETT SYNDROME RESEARCH TRUST · May 19, 2021

Keywords

ClinConnect Summary

The Rett Syndrome Global Registry is a project that aims to gather important information about caring for individuals with Rett syndrome, a rare genetic disorder. This registry is entirely online, allowing caregivers from all over the world to share their experiences and insights. Caregivers can track their loved one's symptoms and care strategies over time, and they have the option to combine medical records for easier access. Researchers can use this collected information to better understand Rett syndrome and improve future treatments.

To participate in this registry, caregivers must be able to provide electronic consent, and they must be caring for someone diagnosed with Rett syndrome or who has a specific genetic mutation called MECP2. The registry is open to individuals of all ages, whether they are currently living or have passed away. This is a great opportunity for caregivers to contribute to research that could lead to better care and clinical trials for Rett syndrome in the future.

Gender

ALL

Eligibility 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