Article ID | Journal | Published Year | Pages | File Type |
---|---|---|---|---|
5825504 | Clinical Therapeutics | 2014 | 14 Pages |
Abstract
We present a model process for advocacy organizations aiming to promote patient-centered drug development. The community-engaged approach was successfully used to develop and implement a survey to measure caregiver preferences. Caregivers were willing to accept a serious risk when balanced with a noncurative treatment, even absent improvement in life span. These preferences should inform the Food and Drug Administration's benefit-risk assessment of emerging DMD therapies. This study highlights the synergistic integration of traditional advocacy methods and scientific approach to quantify benefit-risk preferences.
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Authors
Holly L. MS, Ilene MPH, Ryan BA, John F.P. PhD,