NCT06925269Recruiting
DMD Voice: Qualitative Interviews With Patients and Caregivers
Duchenne Muscular Dystrophy Quality of Life: Qualitative Interviews With Patients and Caregivers
Source: ClinicalTrials.gov · Last updated 30 Apr 2025 · Not updated for over 12 months - ask the site whether it is still open
Brief summary (registry, in English)
The purpose of this study is to understand DMD functional losses or abilities and their association with independence and quality of life from the perspective of individuals with DMD and/or and their caregivers. This is a qualitative interview study in which individuals with DMD and/or their caregivers will be asked to participate in a semi-structured, approximately 60- minute interview. Interviews will focus on functional abilities and independence. Caregivers and boys with DMD will be interviewed. This study includes no treatment nor intervention; however, some participants are being treated by a drug that is approved in the U.S. and the U.K. and under investigation in other geographies.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 68 (estimated)
- First submitted
- 3 Apr 2025
- Start date
- Mar 2025
- Primary completion date
- Dec 2025
- Lead sponsor
- Red Nucleus Enterprise Solutions, LLC
- Diseases
- Duchenne muscular dystrophy
- NCT number
- NCT06925269
What you commit to
- Study type: Observational
- Planned participants: 68
- From Mar 2025 to the primary completion date, Dec 2025
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- \-
Who the study is looking for
- Subsample A - Patients
- Eligible participants for Subsample A must:
- Have been treated with Givinostat for at least 2 years
- Be at least 10 years of age with signed consent of a parent or legal guardian
- Be currently taking givinostat
- Willing and able to participate in a video and/or audio recorded interview
- Subsample A - Caregivers
- Eligible caregivers for Subsample A must:
- Be a parent or legal guardian of an individual with DMD that has been taking givinostat for at least two years
- Willing and able to participate in a video and/or audio recorded interview
- Subsample B - Caregivers
- Eligible caregivers for Subsample B must:
- Provide care to an individual with DMD who is unable to raise their hands above their head as confirmed by the caregiver
- Reside in the United States or Canada
- Able to read, speak, and understand English
- Willing and able to participate in a video and/or audio recorded interview Have access to a stable internet connection
Age in the registry: 10 years to - · Sex: Male · Does not accept healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Red Nucleus Coordinator of this site? Confirm its status | Yardley | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.