The Diagnostic Experience of Male Rett Syndrome

Last updated: March 28, 2024
Sponsor: Children's Hospital Colorado
Overall Status: Active - Recruiting

Phase

N/A

Condition

Autism

Rett Syndrome

Treatment

Male Rett

Clinical Study ID

NCT06346106
23-0075
  • Ages < 100
  • Male

Study 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 Criteria

Inclusion

Inclusion Criteria:

  • English-speaking parents (over the age of 18) of male children (all ages, alive ordeceased) with confirmed genetic diagnosis of male RTT

Exclusion

Exclusion Criteria:

  • parents of male MECP2 duplication syndrome

Study Design

Total Participants: 80
Treatment Group(s): 1
Primary Treatment: Male Rett
Phase:
Study Start date:
May 24, 2023
Estimated Completion Date:
April 30, 2024

Connect with a study center

  • University of Colorado Anschutz Medical Campus

    Aurora, Colorado 80045
    United States

    Active - Recruiting

Not the study for you?

Let us help you find the best match. Sign up as a volunteer and receive email notifications when clinical trials are posted in the medical category of interest to you.