DMD Voice: Qualitative Interviews With Patients and Caregivers
NCT06925269 · Status: RECRUITING · Type: OBSERVATIONAL · Enrollment: 68
Last updated 2025-04-30
Summary
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.
Conditions
- Duchenne Muscular Dystrophy (DMD)
Sponsors & Collaborators
-
Italfarmaco S.A
collaborator INDUSTRY -
Red Nucleus Enterprise Solutions, LLC
lead INDUSTRY
Principal Investigators
-
Mindy Leffler, M.Ed. · Red Nucleus Solutions
Eligibility
- Min Age
- 10 Years
- Sex
- MALE
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2025-03-31
- Primary Completion
- 2025-12-31
- Completion
- 2026-12-31
Countries
- United States
Study Locations
More Related Trials
-
Evaluation of Home Based Assessments on Participants With DMD
NCT05657938 ·Status: COMPLETED
-
Characterization of Clinical Skeletal and Cardiac Impairment in Carriers of DMD and BMD
NCT02972580 ·Status: ACTIVE_NOT_RECRUITING
-
Determining Feasibility and Acceptability of Sharing Video Recordings With Patients With ALS and Caregivers
NCT04719403 ·Status: COMPLETED ·Phase: NA
-
Exploratory Study of NS-065/NCNP-01 in DMD
NCT02081625 ·Status: COMPLETED ·Phase: PHASE1
-
The Safety, Efficacy and Tolerability of Remote Ischemic Preconditioning as a Therapy to DMD
NCT02614820 ·Status: UNKNOWN ·Phase: NA
-
Research of Biomarkers in Duchenne Muscular Dystrophy Patients
NCT01380964 ·Status: COMPLETED
-
The Burden of Access in Duchenne Muscular Dystrophy in the US
NCT03951675 ·Status: COMPLETED
-
Safety and Dose Finding Study of NS-065/NCNP-01 in Boys With Duchenne Muscular Dystrophy (DMD)
NCT02740972 ·Status: COMPLETED ·Phase: PHASE2
-
Diagnostic Journey, Patient Experience, and Disparities in the Treatment of Spinal Muscular Atrophy (SMA) in the MedStar Health System
NCT07223489 ·Status: RECRUITING
-
Expanded Access Study of UC-MSC in DMD Patients
NCT06579352 ·Status: AVAILABLE
-
Extension Study of NS-065/NCNP-01 in Boys With Duchenne Muscular Dystrophy (DMD)
NCT03167255 ·Status: COMPLETED ·Phase: PHASE2
-
This is a Study to Get More Information About Non Ambulatory Boys & Men With Duchenne Muscular Dystrophy
NCT01098708 ·Status: COMPLETED
-
Bone Marrow-Derived Autologous Stem Cells for the Treatment of Duchenne Muscular Dystrophy
NCT03067831 ·Status: UNKNOWN ·Phase: PHASE1/PHASE2
-
Stem Cell Therapy in Muscular Dystrophy
NCT02241928 ·Status: WITHDRAWN ·Phase: PHASE1
-
Where Does Hope Fit In? The Relationship Between Hope, Uncertainty, and Coping Efficacy in Mothers of Children With Duchenne/Becker Muscular Dystrophy
NCT02194725 ·Status: COMPLETED
-
Studying Skeletal Muscle, Heart, and Diaphragm Imaging in Boys With Duchenne Muscular Dystrophy
NCT01451281 ·Status: COMPLETED
-
Assessment of Neurodevelopmental Needs in Duchenne Muscular Dystrophy
NCT05280730 ·Status: COMPLETED
-
Assessing the Fertility Status of Men With Spinal Muscular Atrophy (SMA)
NCT06194539 ·Status: RECRUITING
-
A Study to Evaluate the Safety and Tolerability of PF-06939926 Gene Therapy in Duchenne Muscular Dystrophy
NCT03362502 ·Status: TERMINATED ·Phase: PHASE1
-
Test-Retest Reliability of Pulmonary Function Tests in Patients With Duchenne's Muscular Dystrophy
NCT00207857 ·Status: WITHDRAWN
-
Study to Evaluate the Safety and Efficacy of PF-06939926 for the Treatment of Duchenne Muscular Dystrophy
NCT04281485 ·Status: ACTIVE_NOT_RECRUITING ·Phase: PHASE3
-
Evaluation of the Immediate Effect and Safety of DMA™ Novel Muscle Stimulation Technology
NCT04296201 ·Status: COMPLETED ·Phase: NA
-
Effect of Functional Exercise in Patients With Spinal Bulbar Muscular Atrophy
NCT01369901 ·Status: COMPLETED ·Phase: PHASE1/PHASE2
-
Safety and Efficacy of P-188 NF in DMD Patients
NCT03558958 ·Status: TERMINATED ·Phase: PHASE2
-
Exploratory Study of NS-089/NCNP-02 in DMD
NCT04129294 ·Status: COMPLETED ·Phase: PHASE1/PHASE2