Quality of Life in Pediatric Participants With HHT
Part of paid clinical trials in Cincinnati, Ohio.
- Sponsor
- Ashley Nelson
- Study ID
- NCT07474428
- Status
- Not Yet Recruiting
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Conditions
- Hereditary Haemorrhagic Telangiectasia (HHT)
Eligibility Criteria
- Sex
- ALL
- Age
- 2 Years - 25 Years
- Healthy Volunteers
- Not accepted
Study Details
This observational study evaluates health-related quality of life (HR-QoL) in pediatric and young adult patients aged 2-25 years with Hereditary Hemorrhagic Telangiectasia (HHT). Eligible participants are patients receiving care at Cincinnati Children's Hospital Medical Center and / or their caregivers. Participants will complete validated quality-of-life questionnaires assessing physical, emotional, social, and disease-specific functioning over the past 30 days. A paired retrospective chart review will assess disease severity and clinical utilization, including procedures and imaging studies. The primary objective is to describe mean QoL scores for this population. Secondary objectives include evaluating associations between QoL scores, disease severity, and clinical utilization.
Key Dates
- Start date
- Jul 31, 2026
- Status verified
- Mar 2026
- Primary completion
- Dec 31, 2026
- Completion
- Aug 31, 2027
Study Design
- Enrollment
- 70 participants (estimated)
Primary Outcome Measure
PedsQL Total Score [ Time Frame: 30 days ]
Central Contacts
- Katie Wusik, Master of Genetic Counseling(513) 636-3200
- Ashley Nelson
Locations (1)
| Facility | City | State | ZIP | Site coordinators |
|---|---|---|---|---|
| Cincinnati Children's Hospital Medical Center | Cincinnati | Ohio | 45221 |