title: Construction of a US fibromyalgia registry using the Fibromyalgia Research Survey criteria.
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.
authors.affiliation: Fibromyalgia and Chronic Fatigue Clinic, Mayo Clinic, Rochester, Minnesota, USA.
authors.forename: Mary O
authors.initials: MO
authors.lastname: Whipple
authors.forename: Samantha J
authors.initials: SJ
authors.lastname: McAllister
authors.forename: Terry H
authors.initials: TH
authors.lastname: Oh
authors.forename: Connie A
authors.initials: CA
authors.lastname: Luedtke
authors.forename: Loren L
authors.initials: LL
authors.lastname: Toussaint
authors.forename: Ann
authors.initials: A
authors.lastname: Vincent
mesh_terms: D003710:Demography; D005260:Female; D005356:Fibromyalgia / Q000453:epidemiology*; D006306:Health Surveys / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D012042:Registries / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology
keywords: epidemiology; pain; rheumatology