The Burden of Access in Duchenne Muscular Dystrophy in the US

Completed

Conditions studied: Duchenne Muscular Dystrophy

In brief

This study is being conducted to determine if DMD patients / families and healthcare providers experience burdens related to access, and if so, to identify them, and to determine life impacts to the patient, if any, of these burdens. Data from healthcare providers will be collected by an online survey and from patients/families by one on one telephone interview.

Key facts

Study ID

NCT03951675

Run by

University of Florida

People needed

57

Starts

2019-06-18

Expected to finish

2020-05-28

Last updated by the study team

2020-08-06

Who can join

Age: 18 and older, up to 99. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• Patient/Parent interviews
• Patients residing in the US who have been diagnosed with DMD who are age 18 years or older, or the parent / legal guardian of a person of any age who has been diagnosed with DMD,
• Have provide "Proof of DMD" to ensure that they are impacted by the disease,
• Who have provided sufficient information in the RSVP process to determine their functional status; ambulatory, transitional or non-ambulatory,
• State that they are the person who deals with insurance issues for the affected patient and,
• Who are able to understand and consent to participation in the study
• Healthcare Provider survey
• Healthcare providers (physicians, nurse practitioners, and physician assistants) currently involved in the care of patients with DMD
• Are currently practicing in the US,
• Who have provided sufficient information in the survey screening to determine that they currently care for DMD patients,
• State that they and/or persons on their staff interface with insurance companies for DMD patients related to access to medications, services and/or medical equipment and,
• Who are able to understand and consent to participation in the study

You may not qualify if…

• There are no stated exclusion criteria in this study. Study population must meet all inclusion criteria in order to be deemed eligible to participate.

Where it is running

• University of Florida — Gainesville, Florida, United States

Full record on ClinicalTrials.gov

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