Ever since 2010, the US Department of Defense (DOD) has funded many millions of dollars of Fragile X research through the Peer Reviewed Medical Research Program (PRMRP). Established and directed by Congress, the PRMRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.
FRAXA nominated three individuals to join in the program this year. Over the past several weeks, Katie Clapp, Ellen Skala, and Jennifer Frobish participated in the evaluation of research applications submitted to the PRMRP. As consumer reviewers, they were full voting members (along with prominent scientists) at meetings to help determine how the $360 million appropriated by Congress for Fiscal Year 2020 will be spent on PRMRP research.
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Ellen Skala said that, “it was really rewarding to share with scientists how this research would impact the Fragile X community.”
Putting the Focus on Patients, Caregivers, and Family Members
Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since 1999. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.
The mission of the PRMRP is to encourage, identify, select, and manage medical research projects of clear scientific merit and direct relevance to military health. We are very pleased to share the news that Fragile X will again be an approved research topic for 2021.