The Congressionally Directed Medical Research Programs’ (CDMRP), Duchenne Muscular Dystrophy Research Program (DMDRP) consumer advocates Tiffany Cook and Clint M. Porter recently participated in the evaluation of research applications submitted to the DMDRP. Tiffany Cook and Clint M. Porter were nominated for participation in the program by CureDuchenne, Newport Beach, CA. As consumer reviewers, they were full voting members, along with prominent scientists at meetings to help determine how the $3.2 million appropriated by Congress for Fiscal Year 2019 will be spent on Duchenne muscular dystrophy research.
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Tiffany said that, “this is an honor to represent the Duchenne community and a valued opportunity to remind the voting members of the heavy burden families carry and the utmost urgency to develop a cure for all individuals affected by Duchenne.” Clint said that, “the review process was very encouraging, and the scientific panel was very interested in the consumer reviewers’ comments. My family has a vested interest in advocating for Duchenne research. Our son was diagnosed in 2017. Organizations like CureDuchenne and research funding through CDMRP provide us hope.”
Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since FY11. Colonel Stephen J. Dalal, Director of the CDMRP, expressed his appreciation for the consumer advocate’s perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient’s perspective, which is real and urgent. The collaboration of Consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.”
Scientists applying propose to support discovery and development of therapeutics, devices, and other interventions, and to promote their rigorous clinical testing for the benefit of military beneficiaries and the general public. The DMDRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.
More information about the CDMRP’s DMDRP is available at the website: https://cdmrp.army.mil/dmdrp/default.