Help Decide the Course of Medical Research-Benefits for Your Center and Families You Serve

The Congressionally Directed Medical Research Programs (CDMRPs) relies on medical consumers, their families, and caregivers to provide direction on which research is most likely to benefit people like themselves. Parent center staff and volunteers, military-connected family members and civilian family members may be eligible to join review panels that decide which research on their disease, injury or condition will get funding from Congress. According to previous participants, it’s an amazing way to help others in similar situations.

Any consumer affected by a particular medical issue can be part of a process that empowers them to use their knowledge and experience to improve treatments and quality of life for others impacted by their medical issue.

In parent centers, we understand that individuals and family members of individuals are the experts with lived experience. We share our expertise to help individuals and families we work with, empowering them to make good decisions and be their own or their children’s best advocates.

CDRMP gives individuals and family members the same type of opportunity on a national scale.

Consumer participants are treated as the subject matter experts they are and in turn participate in a valuable experience that provides them with additional subject matter information.

How it works:

Researchers send their proposals to review panels, which are made up of peer reviewers (other medical research scientists) and consumers. The panelists evaluate the proposals to decide which ones get funding.

Consumer comments are taken into full account during the review process and consumers have full voting status on the panels:

“I have an enormous amount of respect for the scientists, so when they thank me for my involvement in the review process I am taken aback! Here I am in awe of them and what they do, and the fact that they respect and listen to the consumer perspective floors me. But it is also what makes the program so special. Consumers are giving something to the scientific community by offering glimpses of their life. A lab rat could never do that.”  Fiona Hoey, Consumer Reviewer, Multiple Sclerosis Research Program  –Consumer Involvement, Expanding Our Tradition

Congress funds the CDMRP, and the program is administered by the Department of Defense. It’s not limited to conditions that impact military service members; the Department of Defense was chosen “because of its long history in performing medical research studies and because its administrative structure was designed for flexible and quick responses to changing needs and priorities. Scientists and clinicians at major research institutions, universities, and medical centers in the United States and in foreign countries conduct the research supported by these funds.”[i]

Who is eligible to serve on a panel?

  • An individual living with certain diseases, injuries, or conditions (a list of possible conditions is at the end of this article)
  • An individual who is a survivor of certain diseases, injuries, or conditions
  • Family members or caregivers of such individuals

Additional requirement:

  • Individuals, family members, or caregivers are active participants in an advocacy, outreach, education or support organization related to their condition, so they may represent a viewpoint wider than their personal perspective. Potential consumer reviewers submit a nomination form from that organization as part of the consumer reviewer selection process.

Specifically, CDMRP is looking for people who have:

  • Commitment to represent the community affected by your disease, injury, or condition to help to find a cure or improved treatment for the disease, injury or condition
  • Active participation in your advocacy, outreach, support, and/or education organization
  • Commitment to learning about your disease, condition, or injury
  • Interest in learning about science, medicine, and/or research through a variety of reliable sources
  • Evidence of your ability to express your ideas in English, both verbally and in writing
  • Evidence of learning and sharing information with individuals or groups
  • Flexibility and openness to new ideas
  • Ability to initiate and respond to questions and participate in group discussions
  • Ability to bring the community’s perspective to the process
  • Willingness to bring a sense of urgency to find a cure or treatment for the disease, injury or condition

Consumer reviewers may be eligible for a small consultant’s fee for their time, and the Department of Defense pays for travel, accommodations, and meals during the course of a review meeting.

Here are just a few of the research areas for which eligible individuals can serve as consumer reviewers:

  • Autism
  • Alzheimer’s
  • Cardiomyopathy
  • Duchene Muscular Dystrophy
  • Epilepsy
  • Hydrocephalus
  • Inflammatory Bowel Diseases
  • Multiple Sclerosis
  • Myotonic Dystrophy
  • Neurofibromatosis
  • Parkinson’s
  • Pediatric Cancer
  • Tick-Borne Disease
  • Tuberous Sclerosis Complex

To apply for the program, and for more information:

Congressionally Directed Medical Research Programs website

Program Brochure: Consumer Involvement, Expanding Our Tradition

[i] Consumer Involvement Frequently Asked Questions