June 16, 2008

Patient Representatives Played a Crucial Role

 in Future Fibromyalgia Research

Approximately 200 people from around the world attended OMERACT 9 May 27-31 in Kananaskis, Canada. Developed in 1992, OMERACT stands for Outcome Measures in Rheumatology. Originally limited to outcome measures in rheumatoid arthritis clinical trials, the initiative has since evolved to include outcome measurement across the spectrum of rheumatology intervention studies. While fibromyalgia is not a rheumatic disease, the disorder currently falls under this diagnostic “umbrella.”

“OMERACT plays a significant role in facilitating improved outcome measurements in intervention studies, which ultimately benefit patients,” says Phillip Mease, M.D., who chairs or co-chairs three working groups of OMERACT: fibromyalgia, psoriatic arthritis and single joint assessment.

The informal international network, which strives to improve outcome measurement through a data-driven, consensus process, has a five-member organizing committee with members from three continents. It also has a 15-member scientific advisory committee, comprising international opinion leaders from nine countries. Meetings are held every two years to develop new consensus and guidelines for outcomes in rheumatic diseases.

According to Lynne Matallana, president and founder of the National Fibromyalgia Association and a member of the OMERACT fibromyalgia working committee, the level of interest in and understanding of fibromyalgia has increased significantly since the committee’s prior meeting in 2006 in Malta. This year’s program included a module dedicated solely to fibromyalgia.

The fibromyalgia community was well represented at the meeting, with OMERACT and the National Fibromyalgia Association collaborating to obtain funding for fibromyalgia patients to attend. Matallana was joined by three other individuals who suffer from fibromyalgia: Sharon Waldrop of Michigan, Michael Peterman of Florida and Kathryn Longley of the United Kingdom. Each of these individuals spoke at the meeting, participated in the patient workshops and was granted voting rights. These patient representatives played a crucial role by sharing the patient perspective and guiding several discussions, leading the group to decisions that will be implemented in future fibromyalgia research.

“In getting to know my new friends in the patient group, I learned that we all have so much to contribute,” says Sharon Waldrop. “One of the biggest things I learned from OMERACT 9 was that the future of medicine will demand that patients take a more active role in all areas of their care—including research."

Participants also included dozens of physicians and researchers worldwide, as well as James Witter, MD, the chief science officer for the National Institutes of Health’s PROMIS (Patient-Reported Outcomes Measurement Information System) program. Witter spoke on the impact that PROMIS will have on patient-doctor communications, earlier diagnosis and improved treatment.

For more information on OMERACT, visit http://omeract.org/.