The Rett Syndrome Global Registry

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.

Conditions

Rett Syndrome

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Study Overview

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Study Details

Study overview

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.

The Rett Syndrome Global Registry

The Rett Syndrome Global Registry

Condition
Rett Syndrome
Intervention / Treatment

-

Contacts and Locations

Trumbull

Rett Syndrome Research Trust, Trumbull, Connecticut, United States, 06611

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.

For general information about clinical research, read Learn About Studies.

Eligibility 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.
  • 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

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Rett Syndrome Research Trust,

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

Study Record Dates

2031-06-30