Construction of a US fibromyalgia registry using the fibromyalgia research survey criteria

Mary O. Whipple, Samantha J. Mcallister, Terry H. Oh, Connie A. Luedtke, Loren L. Toussaint, Ann Vincent

Research output: Contribution to journalArticlepeer-review

10 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)398-399
Number of pages2
JournalClinical and translational science
Issue number5
StatePublished - Oct 2013


  • Epidemiology
  • Pain
  • Rheumatology

ASJC Scopus subject areas

  • General Neuroscience
  • General Biochemistry, Genetics and Molecular Biology
  • Pharmacology, Toxicology and Pharmaceutics(all)


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