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The Diagnostic Experience of Male Rett Syndrome

NCT06346106 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 80

Last updated 2024-04-03

No results posted yet for this 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.

Conditions

Interventions

GENETIC

Male Rett

This study does not have an intervention. Participants of this study must be parents or caregivers to boys with Rett syndrome.

Sponsors & Collaborators

  • University of Colorado, Denver

    collaborator OTHER

  • Vanderbilt University School of Medicine

    collaborator OTHER

  • University of Alabama at Birmingham

    collaborator OTHER

  • University of Pennsylvania

    collaborator OTHER

  • International Rett Syndrome Foundation

    collaborator OTHER

  • Rocky Mountain Rett Association

    collaborator UNKNOWN

  • Children's Hospital Colorado

    lead OTHER

Principal Investigators

  • Timothy Benke, MD, PhD · University of Colorado, Denver

Eligibility

Min Age
0 Years
Max Age
100 Years
Sex
MALE
Healthy Volunteers
No

Timeline & Regulatory

Start
2023-05-24
Primary Completion
2024-04-30
Completion
2024-04-30

Countries

  • United States

Study Locations

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Entities

Diseases
Companies

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06346106 on ClinicalTrials.gov