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| Name | Class |
|---|---|
| Italfarmaco S.A | INDUSTRY |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Subsample A - Caregivers | Caregivers of individuals with DMD treated with givinostat for at least 2 years | ||
| Subsample A - Patients | Patients with DMD treated with givinostat for at least 2 years | ||
| Subsample B - Caregivers | Caregivers of individuals with DMD never treated with givinostat |
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| Measure | Description | Time Frame |
|---|---|---|
| Qualitative Interview | Participants will participate in a semi-structured interview | 60 minutes |
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Inclusion Criteria:
Subsample A - Patients
Eligible participants for Subsample A must:
Subsample A - Caregivers
Eligible caregivers for Subsample A must:
Subsample B - Caregivers
Eligible caregivers for Subsample B must:
Exclusion Criteria:
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Caregivers of individuals with Duchenne Muscular Dystrophy (DMD) and patients with DMD
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Mary Hubbard | Contact | 904-541-9326 | mhubbard@rednucleus.com |
| Name | Affiliation | Role |
|---|---|---|
| Mindy Leffler, M.Ed. | Red Nucleus Solutions | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Red Nucleus | Recruiting | Yardley | Pennsylvania | 19067 | United States |
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| ID | Term |
|---|---|
| D020388 | Muscular Dystrophy, Duchenne |
| ID | Term |
|---|---|
| D009136 | Muscular Dystrophies |
| D020966 | Muscular Disorders, Atrophic |
| D009135 | Muscular Diseases |
| D009140 | Musculoskeletal Diseases |
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| D009468 | Neuromuscular Diseases |
| D009422 | Nervous System Diseases |
| D040181 | Genetic Diseases, X-Linked |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |