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The Diagnostic Experience of Male Rett Syndrome

The Diagnostic Experience of Male Rett Syndrome

Recruiting
100 years and younger
Male
Phase N/A
  • Technical (Original)
  • Simplified (AI rewritten)

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Overview

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

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

Study details
    Rett Syndrome
    RTT

NCT06346106

Children's Hospital Colorado

17 April 2024

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FAQs

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