The Diagnostic Experience of Male Rett Syndrome

Children's Hospital Colorado

Status: Enrolling

Conditions: RTT; Rett Syndrome

Treatments: Genetic: Male Rett

Study type: Observational

Funder types: Other

Identifiers

NCT06346106

23-0075

Details and patient eligibility

About

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.

Enrollment: 80 estimated patients

Sex: Male

Ages: Under 100 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

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

Exclusion criteria

• parents of male MECP2 duplication syndrome