Grant to Fund PPMD Survey of People With Duchenne Muscular Dystrophy
Parent Project Muscular Dystrophy (PPMD), through a grant from the National Institutes of Neurological Disorders and Stroke, will survey and interview the Duchenne muscular dystrophy community regarding the clinical trial experience.
"We have a great advisory committee of patients with Duchenne, parents, clinicians, researchers and industry,” said PPMD's Senior Director of Education and Outreach Holly Peay in a news release. “Our goal is to analyze hopes and expectations in the clinical trial experience, comparing reasonable hopes and expectation versus unrealistic ones, so we can make recommendations that improve the experience for the participating families. This information will help inform clinicians as they prepare to take their prospective therapies through the clinical trial process."
Peay explains that it is important to stay in touch with the community to make sure patients are receiving good care and the needs of families are being met. "While we are all fighting to end Duchenne, it is important for families to live well today.”
Through the survey, PPMD hopes to gather information from families that will advise future PPMD plans and interventions.
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