Understanding the experiences of parents with sons who have Rett Syndrome
The Diagnostic Experience of Male Rett Syndrome
Children's Hospital Colorado · NCT06346106
This study is trying to learn from parents of boys with Rett Syndrome about their experiences and challenges to improve the support and care they receive.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 80 (estimated) |
| Ages | 0 Years to 100 Years |
| Sex | Male |
| Sponsor | Children's Hospital Colorado (other) |
| Locations | 1 site (Aurora, Colorado) |
| Trial ID | NCT06346106 on ClinicalTrials.gov |
What this trial studies
This study gathers insights from parents or caregivers of boys diagnosed with Rett Syndrome to understand their diagnostic journey and the healthcare services they utilize. Participants will complete an online survey that explores their experiences, challenges, and priorities regarding their son's health needs. The focus is on collecting qualitative data to improve understanding of the male Rett Syndrome experience. The study aims to highlight the unique aspects of care and support required for these families.
Who should consider this trial
Good fit: Ideal candidates are English-speaking parents or caregivers of male children with a confirmed genetic diagnosis of Rett Syndrome.
Not a fit: Parents of male children with MECP2 duplication syndrome may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance awareness and improve the support systems for families affected by male Rett Syndrome.
How similar studies have performed: While there may be limited studies focusing specifically on male Rett Syndrome, similar observational studies have successfully gathered valuable insights into rare conditions.
Eligibility criteria
Show full inclusion / exclusion criteria
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
Where this trial is running
Aurora, Colorado
- University of Colorado Anschutz Medical Campus — Aurora, Colorado, United States (RECRUITING)
Study contacts
- Principal investigator: Timothy Benke, MD, PhD — University of Colorado, Denver
- Study coordinator: Natalia Klamut
- Email: malerettstudy@cuanschutz.edu
- Phone: (720) 277-9095
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Rett Syndrome, RTT