Scientific Workshops, Conferences, and Committees Reports
NIAMS FIBROMYALGIA PROGRAM ASSESSMENT
Overview and Goals
On September 18-19, 2002, the NIAMS conducted an assessment of the funded fibromyalgia (FM) research portfolio. Approximately 40 currently funded investigators, additional scientists, representatives of patient advocacy groups, and NIH staff participated. The purpose of the Fibromyalgia Program Assessment was to provide NIAMS staff with information and expert recommendations regarding the NIH-funded fibromyalgia research portfolio.
The Assessment was intended to provide an update on the current state of funded FM research, identify common difficulties in conducting this research and suggest problem-solving strategies, and identify gaps in the current portfolio and opportunities and potential new directions for future research. Further, the process was designed to enhance communication and promote collaboration among investigators, invigorating research efforts aimed at understanding, treating, and preventing this disorder.
Participants were provided with background materials to prepare for the discussion. These materials included a list of all NIH-funded FM grants for fiscal year 2001 and lists of NIH-funded grants in related areas (i.e., chronic fatigue syndrome, sleep and fatigue, sleep and pain); abstracts of the funded FM grants for fiscal year 2001; copies of relevant requests for applications and program announcements since 1994; the summary of the NIAMS-sponsored 1996 scientific workshop entitled,”The Neuroscience and Endocrinology of FM;” and a PubMed bibliography of published FM research from 2000-2002. Participants were asked to review these materials prior to the Program Assessment and to be prepared to discuss the following questions.
1. What are the major unanswered questions regarding the epidemiology, etiology, course, and outcomes of fibromyalgia? Are grantees addressing these questions adequately with current approaches?
2. Are appropriate approaches to prevention and treatment being pursued with currently supported research? What are the gaps in the portfolios with regard to intervention strategies?
3. If we could expand the FM portfolio, what types of research would be the best investment? What new opportunities or technologies are we missing? Conversely, if we had to focus the portfolio more narrowly, what specific areas should have lower priority?
4. What methodological, technical, and logistic issues must be addressed to allow FM research to move forward more smoothly and productively? What are the major challenges to conducting FM research and how might these challenges be minimized or overcome?
Structure and Process
The Program Assessment was divided into four major segments. In the first segment, participants focused on scientific themes and issues in FM research. These discussions highlighted the state of knowledge and the contents and status of research activities conducted with NIH support in the following topic areas: pain and pain processing; the HPA axis and autonomic nervous system function; epidemiology, risks, psychosocial issues, and overlap syndromes; and intervention research. Introductory comments by a moderator for each topic were followed by brief commentary from several researchers with expertise in the area, followed by general discussion.
The second segment was structured in the same manner, but with a focus on methodological themes and issues: recruitment and retention of study participants, control groups, and special populations; measurement issues with regard to symptoms; brain imaging methodology; and basic research and animal models. This discussion highlighted strengths and weaknesses of current methods, identified obstacles to progress in research and discovery, and explored problem-solving strategies participants may have used to surmount difficulties.
In the third segment breakout groups, loosely organized around the scientific themes from the first segment, focused on developing specific responses to the questions listed above, informed by the preceding discussions and review of materials summarizing the portfolio. Finally, the sense of the breakout groups and identified challenges, opportunities, and needs were presented and discussed in the full group.
Challenges in FM Research
The main challenges in conducting fibromyalgia research identified by participants are listed below.
Uncertainty regarding appropriate diagnostic criteria
Confusion or inconsistency regarding study inclusion and exclusion criteria and appropriate control groups
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Confusion or inconsistency regarding appropriate outcome measures
Lack of interdisciplinary fibromyalgia meetings
Variability in assessment of biological markers and limitations in current measurement technologies and methods
Limited animal models
Recruitment and retention of study participants
Gaps in the Portfolio and/or Research Needs
This list reflects the participants’ opinions regarding the most important research needs in fibromyalgia given the current state of knowledge and the existing NIH-funded portfolio.
Genetic and family studies
Intervention studies – especially pharmacologic trials and combination interventions
Need to identify subgroups of FM patients
Studies evaluating autonomic nervous system function in FM
Studies investigating the relationship of altered hypothalamic-pituitary-adrenal axis and autonomic nervous system function to FM symptoms
Studies to increase understanding of abnormal pain processing in FM, focusing on central sensitization and on abnormalities in pain inhibitory processes
Prospective, longitudinal studies in “at-risk” cohorts, community-based epidemiological studies
Studies using innovative imaging techniques to examine neuroendocrine and pain aspects of FM
Secondary data analysis to address questions of risks, onset, criteria
Need to perform family association and twin studies that will identify genetic and environmental contributions to abnormal pain sensitivity or FM
The ideas for overcoming some of the challenges in conducting FM research and specific suggestions for future research directions outlined during the program assessment will be used by the NIAMS to identify program priorities and plan future initiatives and in fibromyalgia.
Deborah Ader, Ph.D., NIH/NIAMS
Gail Adler, Ph.D., Brigham & Women’s Hospital
Graciela Alarcon, M.D., MPH, University of Alabama
Lesley Arnold, M.D., University of Cincinnati
Laurence Bradley, Ph.D., University of Alabama
Dedra Buchwald, M.D., University of Washington
Kenneth Casey, M.D., VA Medical Center
Lin Chang, M.D., University of California
Daniel Clauw, M.D., University of Michigan
Leslie J. Crofford, M.D., University of Michigan
Thereasa Cronan Ph.D., San Diego State University
Jack Edinger, Ph.D., VA Medical Center
Judith Fifield, Ph.D., University of Connecticut
Jennifer Glass Ph.D., University of Michigan
Rae Marie Gleason, National Fibromyalgia Research Association
Christine Goertz, D.C., Ph.D., NIH/NCCAM
Kevin Hackshaw, M.D., Ohio State University
Eleanor Hanna, Ph.D., NIH/ORWH
Terrell J. Hoffeld, D.D.S., Ph.D., NIH/CSR
Luc Jasmin, M.D., Ph.D., FRCS ©, UCSF
Kim Jones, Oregon Health & Science University
Stephen Katz, M.D., Ph.D., NIH/NIAMS
Peter Kaufmann, Ph.D., NIH/NLB
Cheryl Kitt, Ph.D., NIH/NIAMS
Alice Larson, Ph.D., University of Minnesota
Jon D. Levine, M.D., Ph.D., University of California
Tamara Liller, M.A., National Fibromyalgia Partnership, Inc.
Lynne Matallana, National Fibromyalgia Association
Barbara Mittleman, M.D., NIH/NIAMS
Akiko Okifuji, Ph.D., University of Utah
Jane Olson, Ph.D., Case Western Reserve University
Robert Noll, Ph.D., Children’s Hospital Medical Center
Karen Raphael, Ph.D., UMDNJ
Daniel Rooks, D.S.C., Harvard Institute of Medicine
Susana Serrate-Sztein, M.D., NIH/NIAMS
Rochelle Small, NIH/NIDCR
Roland Staud, M.D., University of Florida
Dennis Turk, Ph.D., University of Washington
John Winfield, M.D., University of NC @ Chapel Hill
Alex Zautra, Ph.D., Arizona State University
Deborah Zucker, MD, Ph.D., New England Medical Center Hospital, Inc.