Dr. Peggy Yehl Burke, associate provost and dean of St. Bonaventure University’s School of Graduate Studies, recently participated in the evaluation of research applications submitted to the Neurofibromatosis Research Program sponsored by the Department of Defense.
Burke was nominated for participation in the program by the Children’s Tumor Foundation in Atlanta. As a consumer reviewer, she 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 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.
Neurofibromatosis results from a genetic change (spontaneous or inherited) that causes a variety of symptoms, the most serious of which is the growth of tumors along the nerves.
“I find it rewarding to provide this service and hope the research funded through this process can provide some more satisfactory treatment options than are now available,” said Burke, whose granddaughter was born with neurofibromatosis through a spontaneous mutation.
Until her granddaughter, who lives in Atlanta, was born with it, Burke wasn’t even aware of neurofibromatosis, “and I was shocked that it is more common than MS or most other types of conditions with which we are all more familiar. It actually happens in one out of every 2,500 births.”
Treatment options are limited and no cure exists, said Burke, who credits her background in biology as a student at St. Bonaventure in “helping wade through the research proposals.”
Since 1996, consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of neurofibromatosis research application. To date, 51 consumer reviewers have served on neurofibromatosis panels alongside scientists in the review process.
Col. 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,” he said.
Nearly 90 neurofibromatosis research applications were 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.
More information about the Department of Defense Neurofibromatosis Research Program is available at the website: http://cdmrp.army.mil.