Research participation in the Duchenne muscular dystrophy community: parent perceived barriers and their impact on families | DuchenneXchange

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Scientific Articles

Research participation in the Duchenne muscular dystrophy community: parent perceived barriers and their impact on families

key information

source: University of Pittsburgh

year: 2015

authors: Clinard, Kristin

summary/abstract:

Duchenne Muscular Dystrophy (DMD) is a rare, X-linked degenerative neuromuscular disorder causing severe progressive muscle loss and premature death. While research in DMD is critical to advance treatment and care it also presents many challenges and sacrifices for families who are asked to participate. These barriers and impacts families incur can affect recruitment of research participants.

Poor recruitment constrains the ability to achieve and measure progress in clinical research, and consequently affects how well new therapies perform in the clinical setting. The purpose of the present study was to identify family barriers to research recruitment and participation in DMD research and to explore how these barriers impact families.

 

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