NIAMS
Letter
Response
to Petitions sent September 2002
Jan. 3, 2003
Dear Ms. Rumph:
I am writing in
response to the set of petitions that you forwarded to Dr. Susana Serrate-Sztein
on behalf of yourself and your colleagues at the National EMS Network (NEMSN). As
you noted in your letter, the signatories to the petition that you circulated support
an increase in funding for research on EMS and related conditions. I would ask that
you share this reply with your fellow petitioners.
As Dr. Stephen Katz, Director
of the Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the
National Institutes of Health (NIH) explained in his June letter to you, there are
currently several research solicitations that may be of interest to investigators
studying EMS and related disorders. These include program announcements (PA's) on
the management of chronic pain, and on self-management strategies across chronic
diseases. These and other solicitations have been published in the NIH Guide to Grants
and Contracts and are available electronically on the NIAMS' website at http://www.niams.nih.gov.
I have enclosed copies for your information.
While such solicitations send
an important signal to the research community that the NIH is especially interested
in supporting meritorious applications in these areas, I would like to underscore
that the majority of research the agency funds is unsolicited. That is, independent
investigators from across the country send in applications for research based on
new ideas, promising findings, and innovative approaches - without responding to
a particular solicitation. As you may know, all applications that the NIH receives
- whether solicited or unsolicited - go through a rigorous peer review process to
ensure that we are funding the best possible science given the agency's fiscal resources.
In
your letter, you asked about possible support for a patient registry to facilitate
EMS research. The NIAMS currently funds registries for a number of diseases, such
as fibromyalgia and lupus, as we recognize the value of such a research resource.
However, because support for such registries is long-term and quite costly, the NIAMS
has historically funded them in response to specific requests for proposals (RFP's),
rather than on an unsolicited basis. The last time we issued such a request was in
2000, when we funded new registries for muscular dystrophy, alopecia areata, antiphospholipid
syndrome, and rheumatoid arthritis in African Americans. For a description of these
and other registries supported by the NIAMS, please refer to the enclosed registries
listing.
I know that last summer, Dr. Serrate-Sztein and Dr. Libby Gretz of
the NIAMS participated in a conference call - along with scientific staff from the
National Institute of Allergy and Infectious Diseases (NIAID) - organized by the
NEMSN. In follow-up to that call, NIAID and NIAMS staff have discussed the possibility
of sponsoring a workshop to review the state of the science with respect to EMS,
and identify opportunities for future research. Once the NIH has a final budget for
fiscal year (FY) 2003, we will be better able to determine whether sponsoring such
a workshop is feasible in the next few months. If such plans do proceed, I will certainly
notify you and your colleagues.
I hope this information is helpful and would
be happy to speak with you by phone at 301-496-0803 if you have further questions
or concerns.
Sincerely yours,
Anita M. Linde
Senior Program
Analyst
Office of the Director
National Institute of Arthritis and
Musculoskeletal
and Skin Diseases
Enclosures
CC: Dr. Libby Gretz
Dr. Susana Serrate-Sztein