The Diagnostic Experience of Male Rett Syndrome
Status: Recruiting
Location: See location...
Intervention Type: Genetic
Study Type: Observational
SUMMARY
The Diagnostic Experience of Male Rett Syndrome collects information on the lived experiences of parents or caregivers to boys with Rett Syndrome. Key information examined includes the process of getting a male Rett syndrome diagnosis, your son's systems of care, and your priorities for his health needs. Enrolled participants will complete an online survey with questions about having a son with Rett Syndrome. The Diagnostic Experience of Male Rett Syndrome study is available to parents or caregivers to boys (alive or passed) with Rett Syndrome. Compensation is not provided.
Eligibility
Participation Requirements
Sex: Male
Maximum Age: 100
View:
• English-speaking parents (over the age of 18) of male children (all ages, alive or deceased) with confirmed genetic diagnosis of male RTT
Locations
United States
Colorado
University of Colorado Anschutz Medical Campus
RECRUITING
Aurora
Contact Information
Primary
Natalia Klamut
malerettstudy@cuanschutz.edu
(720) 277-9095
Time Frame
Start Date: 2023-05-24
Estimated Completion Date: 2024-04-30
Participants
Target number of participants: 80
Related Therapeutic Areas
Sponsors
Collaborators: Rocky Mountain Rett Association, International Rett Syndrome Foundation, University of Alabama at Birmingham, University of Colorado, Denver, Vanderbilt University School of Medicine, University of Pennsylvania
Leads: Children's Hospital Colorado