The Burden of Access in Duchenne Muscular Dystrophy in the US
NCT ID: NCT03951675
Last Updated: 2020-08-06
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
57 participants
OBSERVATIONAL
2019-06-18
2020-05-28
Brief Summary
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Detailed Description
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In this non-interventional study, DMD patients / parents of DMD patients will be interviewed to gather qualitative input, in the patient's voice, regarding challenges associated with access to medications, services and medical equipment, and how these burdens impact quality of life.
Healthcare Provider Portion
In this non-interventional study, healthcare providers who see patients with DMD and who deal with insurance issues on behalf of DMD patients will participate in an online survey designed to determine the burden associated with access to medications, services and medical equipment.
Conditions
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Study Design
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CASE_CONTROL
CROSS_SECTIONAL
Study Groups
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Individuals Living with DMD
90 patients/parents
No interventions assigned to this group
Healthcare Providers to Patients with DMD
40 healthcare providers
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* 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
18 Years
99 Years
ALL
Yes
Sponsors
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Engage Health Inc.
INDUSTRY
University of Florida
OTHER
Responsible Party
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Principal Investigators
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Kara Godwin, MSN,APRN
Role: PRINCIPAL_INVESTIGATOR
University of Florida
Locations
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University of Florida
Gainesville, Florida, United States
Countries
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Other Identifiers
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LHF0001
Identifier Type: OTHER
Identifier Source: secondary_id
OCR21561
Identifier Type: -
Identifier Source: org_study_id
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