Construction of a US Fibromyalgia Registry Using the Fibromyalgia Research Survey Criteria. Issue 5 (19th April 2013)

• Record Type: Journal Article
• Authors: Whipple, Mary O.; McAllister, Samantha J.; Oh, Terry H.; Luedtke, Connie A.; Toussaint, Loren L.; Vincent, Ann
• Is Part Of: Clinical and translational science. Volume 6:Issue 5(2013)
• Page Start: 398
• Page End: 399
• Publication Date: 2013-04-19
• Subjects: pain -- epidemiology -- rheumatology; Medicine, Experimental -- Periodicals; Medical innovations -- Periodicals; 616.027
• DOI: 10.1111/cts.12056
• Languages: English
• ISSNs: 1752-8054

Abstract

Abstract: Utilizing billing records, we identified patients seen at Mayo Clinic with a diagnosis or history of fibromyalgia who were then contacted for enrollment in a fibromyalgia research registry. Fibromyalgia was confirmed through medical record review. Eligible patients were mailed an invitation that included a demographic questionnaire and the Fibromyalgia Research Survey. The Fibromyalgia Research Survey yields a widespread pain score (scale range 0–19) and a symptom severity score (scale range 0–12). A total of 4, 034 patients returned the completed survey; 92.8% were female, their mean age was 57.4 (±13.4), and 83.7% were from the Midwest region of the United States. The mean widespread pain score for all participants was 11.3 (±4.5) and the mean symptom severity score was 8.2 (±2.4), indicating moderate‐to‐severe fibromyalgia symptoms, which is not unusual for patients presenting to a tertiary care center. Using a systematic process, we describe the creation of a fibromyalgia registry for future research.