Meeting Summary
The National Institute of Dental and Craniofacial Research and the National Institute of Neurological Disorders and Stroke, together with the NIH Pain Consortium sponsored a workshop on Chronic Overlapping Pain Conditions. The workshop was held Monday and Tuesday, August 13 and 14, 2012 in the Natcher Conference Center, on the NIH Campus in Bethesda, Maryland. The workshop was co-chaired by Daniel Clauw from the University of Michigan and Elizabeth Unger from the Centers for Disease Control and Prevention. The goal of the workshop was to develop a coordinated research strategy addressing 1) underlying etiology; 2) trajectory of disease; 3) risk factors for onset, progression and reversal; and 4) approaches for developing outcome measures and diagnosis of chronic overlapping pain conditions. These overlapping chronic pain conditions include conditions such as fibromyalgia, irritable bowel syndrome and other functional gastrointestinal disorders, interstitial cystitis/bladder pain syndrome, temporomandibular joint disorder, chronic fatigue syndrome, vulvodynia, tension headache, myofascial pain syndrome, Gulf War illness, and multiple chemical sensitivity.
Chronic overlapping pain conditions represent a complex set of painful disorders that occur frequently in the population, lack a firm mechanistic understanding, and are in need of hypothesis-driven research efforts. This workshop brought together researchers with expertise in various pain conditions and other relevant expertise to discuss these conditions and to develop a forward-thinking research agenda. The workshop focused on our current understanding of chronic overlapping pain conditions, their etiology, risk factors, mechanisms of disease, outcome measures, and diagnosis. It was a two day meeting divided into three sessions with short presentations by panelists and extensive discussion periods. The first session provided an overview and epidemiology of chronic overlapping pain conditions. The second session focused on risk factors and mechanisms of disease. The third session centered on patient outcomes, leveraging of current data sets, and new scientific approaches incorporating systems biology. On the last day, four breakout groups met separately to discuss knowledge needed, research opportunities, and training needs in four topic areas including patient classification, common and specific mechanisms of disease, risk factors for disease trajectory, and diagnostics and outcomes measures that will advance our understanding of these conditions. In the final session, all panelists then discussed the individual recommendations and summarized them in a final set of recommendations for the research community.
Recommendations from the Chronic Overlapping Pain Conditions Workshop
The research recommendations resulting from this workshop detailed below derived from discussions in the four topic area breakout groups. At the conclusion of the individual group presentations, a general summary session was held and six critical needs areas were underscored in the ensuing discussion.
They included:
In addition, there was discussion regarding the perceived need for specific peer review panels for pain grant applications containing appropriate scientific expertise. Discussions centered on applicants utilizing a common language and referencing generally agreed upon principles and practices in their applications that reviewers understand as acceptable standards in the pain field. Also, it was felt that members of the NIH Pain Consortium might be able to play a role in guiding any internal dialog regarding this issue.
Approaches to standardize patient classification:
Common mechanisms of disease:
Risk factors for trajectory of disease:
Development of research diagnostics and outcomes measures:
General recommendations:
Proposed workshops:
Support for this workshop was provided by the following Institutes and Offices: National Institute of Dental and Craniofacial Research, National Institute of Neurological Disorders and Stroke, Eunice Kennedy Shriver National Institute of Child Health & Human Development, and Office of Research on Women’s Health.
Agenda
A Workshop on Chronic Overlapping Pain Conditions
August 13-14, 2012
Natcher Conference Center, Building 45
National Institutes of Health
Bethesda, Maryland
Day One
Monday, August 13, 2012
8:30 am Introductions and Welcome
John Kusiak, Program Officer, NIDCR
Story Landis, Director, NINDS
Martha Somerman, Director, NIDCR
NIH Pain Policy Advisor
Workshop Co-chairs: Dan Clauw, Univ. of Michigan and Beth Unger, CDC
Guidance to the Workshop Members
Session 1: Overview and Epidemiology of Chronic Overlapping Pain Conditions
9:00 -9:30 am Overview of the meeting and chronic overlapping pain conditions
Dan Clauw, Univ. of Michigan
9:30 – 9:40 am Discussion
9:40 – 10:00 am Epidemiology of vulvodynia and overlapping conditions
Barbara Reed, Univ. of Michigan
10:00 – 10:10 am Discussion
10:10 – 10:30 am Epidemiologic approaches to pain progression: Lessons from migraine
Richard Lipton, Albert Einstein College of Medicine
10:30 – 10:40 am Discussion
10:40 – 11:00 am Coffee Break
11:00 – 11:20 am Overlapping pain conditions: Disparities and special populations
Carmen Green, Univ. of Michigan
11:20 – 11:30 am Discussion
11:30 – 11:50am The presence of multiple functional somatic syndromes may be a marker for a
common pathogenesis
John Warren, Univ. of Maryland Medical School
11:50 – 12:00pm Discussion
12:00 – 12:30pm General Discussion
12:30 – 1:30 pm Lunch (on your own)
Session 2: Risk Factors and Mechanisms of Disease
1:30 – 1:50 pm Phenotypes/genotypes in common and specific to chronic overlapping pain conditions
Bill Maixner, Univ. of North Carolina
1:50 – 2:00 pm Discussion
2:00 – 2:20 pm Understanding chronic overlapping pain conditions: Lessons learned from twin studies
Niloofar Afari, Univ. of California San Diego
2:20 – 2:30 pm Discussion
2:30 – 2:50 pm Role of quantitative sensory testing in determining mechanisms of
overlapping conditions
Eli Eliav, Univ. of Medicine and Dentistry of New Jersey
2:50 – 3:00 pm Discussion
3:00 – 3:20 pm What has the CDC’s ME/CFS program taught us about overlapping conditions?
Beth Unger, CDC
3:20 – 3:30 pm Discussion
3:30 – 4:00 pm General Discussion
4:00 – 4:15 pm Break
4:15 pm Patient/Advocate Forum:
Terrie Cowley, The TMJ Association
Kim McCleary, The CFIDS Association of America
William Norton, International Foundation for Functional Gastrointestinal Disorders
Christin Veasley, National Vulvodynia Association
4:45 pm Summary and Adjourn for the day
Day Two
Tuesday, August 14, 2012
Session 3: Current and Future Research Issues
8:30 – 8:50 am Patient reported outcomes: Which are most critical? Are new ones needed?
David Williams, Univ. of Michigan
8:50 – 9:00 am Discussion
9:00 – 9:20 am What can we learn from the study of other complex disorders using a systems biology
approach (cardiovascular and autonomic nervous systems)?
Daniel Beard, Medical College of Wisconsin
9:20 – 9:30 am Discussion
9:30 – 9:50 am Large scale pain neuroimaging using the PAIN.LONI repository
Bruce Naliboff, Univ. of California Los Angeles
9:50 – 10:00 am Discussion
10:00 – 10:30 am General Discussion
10:30 – 10:45 Coffee Break
Session 4: Breakout Groups
10:45 am Guidance to the Breakout Groups
Co-chairs: Dan Clauw and Beth Unger
10:50 – 12:00 pm Breakout Groups Meet
Room D: Approaches to standardize patient classification
Room B: Common mechanisms of disease
Room C1: Risk factors for trajectory of disease
Room C2: Development of research diagnostics and outcomes measures
Topics to be discussed by each group:
Identify challenges/opportunities to advancing each area
Identify new knowledge needed to go forward with each area
How to develop a consensus approach
What is feasible in 5 years/10 years?
How to advance training and workforce growth in each area
12:00 – 1:00 pm Lunch
1:00 -2:00 pm Individual Reports from Breakout Groups
2:00 – 3:30 pm Develop a consensus set of research recommendations addressing the 5 discussion topics
3:30 pm Wrap-up and Closing Comments
John Kusiak, NIDCR
Story Landis, NINDS
Martha Somerman, NIDCR
NIH Pain Policy Advisor
Panelists:
Niloofar Afari, Ph.D.
Department of Psychiatry
Univ. of California San Diego
Daniel Beard, Ph.D.
Department of Physiology
Medical College of Wisconsin
Karen Berkley, Ph.D.
Department of psychology
Florida State Univ.
Gert Bronfort, Ph.D.
Wolfe Harris Center for Clinical Studies
Northwestern Health Sciences Univ.
Catherine M. Bushnell, Ph.D.
Division of Intramural Research NIH/NCCAM
Dan Clauw, M.D. (CHAIR)
Division of Rheumatology
Univ. of Michigan
Terrie Cowley
The TMJ Association
Karen Davis, Ph.D.
Division of Brain, Imaging & Behaviour Systems
Toronto Western Research Institute
Eli Eliav, DMD, Ph.D.
Department of Diagnostic Sciences
Univ. of Medicine and Dentistry of NJ
Carmen R. Green, M.D.
Department of Anesthesiology
Univ. of Michigan
Margaret Heitkemper, Ph.D
Center for Research on Management of Sleep
Univ. of Washington
John Kusiak, Ph.D.
Division of Extramural Research
NIH/NIDCR
Jon Levine, M.D., Ph.D.
Division of Rheumatology
Univ. of California San Francisco
Richard Lipton, M.D.
Department of Neurology
Albert Einstein College of Medicine
Bill Maixner, D.D.S., Ph.D.
Department of Endodontics
Univ. of North Carolina, School of Dentistry
Kimberly McCleary
The CFIDS Association of America
Michael A. Moskowitz, M.D.
Neuroscience Center
Massachusetts General Hospital
Bruce D. Naliboff, Ph.D.
Center for Neurovisceral Sciences & Women’s Health
Univ. of California Los Angeles
Linda Porter, Ph.D.
Extramural Research Program
NIH/NINDS
Barbara Reed, M.D., M.S.P.H.
Department of Family Medicine
Univ. of Michigan
Anita Roach, M.S.
Interstitial Cystitis Association
Laura E. Schanberg, M.D.
Department of Pediatrics
Duke Univ. School of Medicine
Roland Staud, M.D.
Division of Rheumatology and Clinical Immunology
Univ. of Florida
Richard Traub, Ph.D.
Department of Neural and Pain Sciences
Univ. of Maryland School of Dentistry
Elizabeth Unger, M.D., Ph.D. (CHAIR)
Chronic Viral Disease Branch
Centers for Disease Control
Christin Veasley
National Vulvodynia Association
Michael Von Korff, Sc.D.
Center for Health Studies
Group Health Cooperative of Puget Sound
John Warren, M.D.
Department of Medicine
Univ. of Maryland School of Medicine
Ursula Wesselmann, M.D., Ph.D.
Department of Anesthesiology
Univ. of Alabama Birmingham
David Williams, Ph.D.
Department of Psychology
Univ. of Michigan
Last updated February 1, 2013