AdvocureNF2 Consumer Participation for FY08 CDMRP NFRP

Scientific Peer Review of Neurofibromatosis Research Applications for the Department of Defense

For Immediate Release.

Neurofibromatosis advocate Rosemary Lee recently participated in the evaluation of research proposals submitted to the Neurofibromatosis Research Program (NFRP) sponsored by the U.S. Department of Defense. Rosemary Lee was nominated for participation in the program by Advocure NF2, Inc (http://www.advocurenf2.org/). As a consumer reviewer, she was a full voting member, along with prominent scientists, at meetings to determine how Congress’ FY08 appropriation of $8 million 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. Rosemary Lee was one of 7 consumer advocates who participated in the August 2008 peer review meetings and provided comments and scores for research proposals.

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of Neurofibromatosis research proposals since 1996. To date, more than 35 consumer reviewers have served on Neurofibromatosis panels alongside scientists in the review process. Captain E. Melissa Kaime, M.D., Director of the Congressionally Directed Medical Research Programs (CDMRP), expressed her appreciation for the consumer advocates’ perspective in the scientific review sessions. “They have provided valuable insight into funding decisions and helped the scientists understand the consumers’ perspective of innovative research. Likewise, the consumer advocates have been enriched by learning more about Neurofibromatosis through discussing proposed research with scientists and seeing the future hopes of successful research.”

More than 65 Neurofibromatosis research proposals will be reviewed for FY08 funds. Scientists applying propose to conduct innovative Neurofibromatosis research aimed at the elimination of Neurofibromatosis. Proposals were solicited across all disciplines, including basic, clinical, social, and psychosocial sciences, as well as public health, economics, quality of life, alternative therapies, occupational health, nursing research, and environmental concerns.
More information about the Department of Defense Neurofibromatosis Research Program (NFRP) is available at the Website: http://cdmrp.army.mil.

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Media Contact:
Gail Whitehead, Public Affairs, 301-619-7783
gail.whitehead@amedd.army.mil

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