NF Northeast staff as well as volunteers have participated for many years in the evaluation of research applications submitted to the Neurofibromatosis Research Program (NFRP) sponsored by the Department of Defense. Consumer reviewers are full voting members, along with prominent scientists, at meetings to help determine how the money appropriated by Congress for a given fiscal year will be spent on future neurofibromatosis research.
Consumer reviewers are asked to represent the collective view of neurofibromatosis survivors and patients, family members, and persons at risk for the disease when they prepare comments on the impact of the research on issues such as disease prevention, screening, diagnosis, treatment, and quality of life after treatment.
Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of neurofibromatosis research applications since 1996. To date, 51 consumer reviewers have served on neurofibromatosis panels alongside scientists in the review process. Colonel Jeffrey C. Leggit, M.D., Director of the Congressionally Directed Medical Research Programs, expressed his appreciation for the perspectives of the consumer advocates in the scientific review sessions. “The Consumer Reviewers on each panel are instrumental in helping the scientists understand the patient’s perspective and provided valuable insight into the potential impact of the proposed project. They bring with them a sense of urgency and remind all of the human element involved in medical research.”
There were nearly 90 neurofibromatosis research applications reviewed for 2012 fiscal year funds. Scientists applying propose to conduct innovative neurofibromatosis research aimed at the elimination of neurofibromatosis. The NFRP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.
For Social Media Use (e.g., blogs, social networking):
As a neurofibromatosis advocate, I recently had the opportunity to serve as a consumer reviewer to evaluate research applications submitted to the Neurofibromatosis Research Program (NFRP) sponsored by the Department of Defense. I was nominated by (Fill in organization name, location). As a consumer reviewer, I was a full voting member, along with prominent scientists, at meetings to help determine how the $12.8 million appropriated by Congress for Fiscal Year 2012 (FY12) will be spent on future neurofibromatosis research.
Consumer reviewers represent the collective view of neurofibromatosis survivors and patients, family members, and persons at risk for the disease as we evaluate the impact of each application. As a consumer reviewer, (Fill in your comment about the experience).
You can get more information on the Neurofibromatosis Research Program, including how to serve as a consumer reviewer, on the CDMRP Web site: http://cdmrp.army.mil.