Sending a clear message to Congress, MS activists will
request “robust funding for MS research” and at least $32B funding for the
National Institutes of Health (NIH). You may be familiar with NIH, but do you
know about the Congressionally Directed Medical Research Program (CDMRP) funded
by the Department of Defense (DoD)?
Diagnosed with MS in 2000, Sarah Keitt volunteers with the
National MS Society and serves as a consumer reviewer for the Multiple Sclerosis ResearchProgram (MSRP) which is part of the CDMRP. I spoke with Sarah about her
role as a peer reviewer for the MSRP, a program that has received $20 million
since 2008 to fund grants for cutting edge, “high risk” research.
How did you become a
peer reviewer for the CDMRP?
“I have been involved with the MS society since 2000 when I
was first diagnosed. I’ve volunteered in one way or another. I have a
background in public health and worked on clinical research issues [in my
career], so I have a strong familiarity with study design, clinical research,
and bioethics. Then an opportunity came up that fit my professional interests
along with my personal interest in MS.”
Sarah was first appointed to the CDMRP in 2008 as a peer
reviewer for the Clinical Research Program. In 2009, Sarah was invited to join
the Stakeholders’ Committee and serve as a consumer reviewer on the Integration
Panel for the newly established Multiple Sclerosis Research Program (MSRP). She
“jumped at the chance.”
Please explain the
research proposal and peer review process?
“At the beginning of the funding cycle – once Congress says,
‘here’s the money you are going to get this year’ – members of the Integration
Panel sit down and have what we call a Vision Setting meeting. We decide: What
are the research gaps? What types of studies do we want to fund?
From there, the Department of Defense (DoD) develops a Call
for Proposals which goes out to researchers around the world [who in turn]
submit study proposals back to the DoD. Depending upon the funding mechanisms –
as there are different types of grants – those pre-proposals might come back to
the Integration Panel for a pre-screening. We might get a couple of pages
describing what they WANT to do.
We pick the best of the best to submit a full proposal.
Those investigators develop a whole proposal, which is 20-30 pages long, and which
gets sent to Peer Review, another panel consisting of MS researchers and
consumer advocates. They read through the whole proposal and judge it based on
study design, feasibility, what kind of impact it’s going to have on MS and
innovation. Then the highest-scoring ones come back to the Integration
Panel.
We take all the proposals and see how they fit into a
balanced research portfolio and how they fulfill the vision we set up at the
beginning of the process. We narrow it down and select the finalists. When we
do that, it goes back to the Department of Defense for final approval and
negotiations on the contracts. Then the grants are awarded.”
Are consumers
involved throughout the process and how long does that take?
“Consumers are there from the very beginning when we decide
what kind of studies we want to fund. They’re there to review the studies when
they come in to see which are the best. And we’re there to make the final
recommendations as to what should be funded. It takes about a year.”
CDMRP ensures research they fund does not duplicate that
being funded by NIH or the National MS Society. “We fund stuff nobody else
really will fund because it is considered ‘high risk’ and there is often not a
lot of preliminary data,” says Sarah. “So we might take the kernel of an idea
that somebody has and fund it so they can get the preliminary data and they can
do the feasibility studies, to then go on to a larger scale study” perhaps
receiving NIH grants.
Results from the first round of research funding from 2008
are just beginning to come in. Complete studies will be published in peer
review journals and MSRP will maintain a research clearing house. View the MSRP Program Booklet to
see Grant recipients from 2009.
Sarah, do you have
any final thoughts?
“If you don’t get involved with advocacy, no one else is
going to do it for you. It’s up to us, as people with MS, to make sure that the
funding for research is there, that services for people with MS and other
disabilities are there. It’s really critical that we get involved in any way
that we can!”
Policy Update:
MS Activists on the Frontline are asking lawmakers for $32B
funding for the National Institutes of Health (NIH) and $10 million for MS
research as part of the CDMRP. NIH has invested more money in MS research than
any other agency in the United States, including many large-scale MS projects
and clinical trials. Approximately $122 million of FY2011 NIH-appropriated
funding was directed to MS-related research.
The National MS Society has spent $761 million in research since
1947, contributing to many of the FDA approved therapies. In 2011 alone, the
Society invested $40 million in 325 new or ongoing research projects. However,
“we need the National Institutes of Health (NIH) and the Congressionally
Directed Medical Research Program (CDMRP) to help fill the gaps,” says Dr.
Timothy Coetzee, Society Chief Research Officer.
Coetzee emphasizes that NIH spending is flat and CDMRP spending
is down. “The uncertainty of funding streams is causing experienced researchers
to leave the field and is making it harder to attract and retain the most
promising researchers and doctors to MS.” But we still have so much more work
to do, especially in the fields of progressive MS, myelin repair, symptom
management and rehabilitation to improve quality of life, and the cause and
prevention of multiple sclerosis.
Follow the National MS Society federal policy efforts on Twitter
at @MSActivists
Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.
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