U.S. Fibromyalgia Registry Developed

Construction of a US Fibromyalgia Registry Using the Fibromyalgia Research Survey Criteria.

By Mary O. Whipple B.A., et al.

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.

Source: Clinical and Translational Science, October 2013. By Mary O. Whipple B.A., Samantha J. McAllister B.A., Terry H. Oh M.D., Connie A. Luedtke M.A., R.N., Loren L. Toussaint Ph.D. and Ann Vincent M.D. Fibromyalgia and Chronic Fatigue Clinic, Mayo Clinic, Rochester, Minnesota, USA.

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