NF Research Program Looking for Consumer Reviewers
The DOD NF Research Program (NFRP) is looking for consumer reviewers.
The Department of Defense, Neurofibromatosis Research Program Overview
The office of the Congressionally Directed Medical Research Programs (CDMRP) was born in 1992 from a powerful grassroots effort that resulted in a congressional appropriation of funds for breast cancer research. This initiated a unique partnership among the public, Congress, and the military. Funds for the CDMRP are added to the Department of Defense (DOD) budget, in which support for individual programs such as the Neurofibromatosis Research Program (NFRP) is allocated via specific guidance from Congress.
The CDMRP welcomes patients, survivors, and advocates who want to play a pivotal role in the future of biomedical research funding. To transform healthcare for our Service members and the American public, the CDMRP looks to those who have the most experience, who understand the effects of a disease, an injury, or a condition – the individuals (consumers) living with Neurofibromatosis. By integrating patients and survivors into the scientific review process, the CDMRP is able to enrich the scientific review with personal perspective, passion, and a sense of urgency that ensures the human dimension is incorporated in the research focus. Selected consumer reviewers bring their community’s perspective, their lived experiences, and a sense of urgency to the process of identifying excellent research focused on Neurofibromatosis.
Applications submitted for funding go through a two-tier review process to identify the best research applications. In the first tier—peer review—applications are reviewed for technical merit. In the second tier—the programmatic review—applications recommended from peer review are compared to each other, and funding recommendations are made based on technical merit, the relevance to the mission of the DOD and the NFRP, and the specific intent of the award mechanism.
Approximately one month before the peer review meeting, scientist and consumer reviewers will be assigned applications to review. Scientist reviewers are required to develop detailed written comments on the proposed work’s feasibility, research design, impact, and other aspects. Consumer reviewers focus their written reviews on the significance of the proposed work as it relates to improved medical care, enhanced quality of life, and the potential of the work to make an impact toward ending Neurofibromatosis. Preparation time prior to the peer review meeting is estimated to be at least 60 hours (spread over 4-6 weeks) and includes mandatory orientations and trainings.
The Peer Review Meeting
Peer review panels meet for formal discussions of the applications, at which time scientists and consumers present their comments. Following deliberation, the panel scores each application’s merit. Panel meetings are held on site, conducted online or by teleconference and/or videoconference. On site meetings are held in the Washington, D.C./Baltimore, MD. metro areas over a 1-day to 2-day window. Travel, accommodations, meals, and a consultant’s fee are provided to each consumer reviewer who participates and completes the full review process. This year due to the ongoing pandemic the NFRP panels will meet virtually.
There is a consultant stipend provided that is reflective with the modality and type of review, and the number of applications assigned. The consultant stipend in no way can reimburse someone for all of the time involved but is rather a way to say, Thank You.
PEER REVIEWER REQUIREMENTS
For consideration as a consumer reviewer, you must be an individual who is:
- A person living with or a family member of a person living with Neurofibromatosis or Schwannomatosis
- An active participant in a Neurofibromatosis or Schwannomatosis organization (support, outreach, or advocacy).
- Up-to-date on the latest Neurofibromatosis or Schwannomatosis science (from a layperson’s perspective) and able to demonstrate an interest in extending their personal scientific knowledge about NF.
- Willing and able to articulately represent the views of the Neurofibromatosis or Schwannomatosis community rather than their personal
- Proficient in basic computer skills, with reliable and consistent access to a computer with internet connection as most work is performed on a web based platform.
- A high school graduate or equivalent who is fluent in reading, speaking, and writing in
Additionally, nominees need the ability to work independently to meet deadlines, be comfortable reading a large volume of complex material in a defined, short period, be capable of providing written analysis, be receptive to feedback, and be able to participate in group discussions about the application.
Please visit https://cdmrp.army.mil/nfrp/default for more information or contact NF Midwest at
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