The Lupus Foundation as an additional source for case ascertainment: developing a community-based lupus registry

Arthritis Care Res. 2000 Jun;13(3):137-40.

Abstract

Objective: To determine whether the local Lupus Foundation of America (LFA) chapter would provide a unique source of additional lupus incident cases for a population-based incidence registry of SLE.

Methods: We reviewed membership and telephone records from the LFA to identify potential lupus cases. These potential cases were compared with the names on our previously developed incidence registry. Non-matches were interviewed concerning demographic characteristics and the signs and symptoms of lupus.

Results: Of the 449 potential lupus cases identified through the LFA Western Pennsylvania Chapter (WPC), 108 (24%) were already in the incident lupus registry. Of the remaining unmatched cases, 26 reported a diagnosis of lupus in Allegheny County between 1985 and 1990. Of these, 5 patients met the criteria for definite or probable lupus.

Conclusion: The LFA-WPC provided a negligible advantage in identifying additional incident lupus cases to those already identified through an established registry.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.
  • Validation Study

MeSH terms

  • Adult
  • Databases, Factual
  • Female
  • Foundations / statistics & numerical data*
  • Hospitals / statistics & numerical data
  • Humans
  • Incidence
  • Lupus Erythematosus, Systemic / diagnosis
  • Lupus Erythematosus, Systemic / epidemiology*
  • Male
  • Pennsylvania / epidemiology
  • Population Surveillance / methods*
  • Registries*
  • Rheumatology / statistics & numerical data
  • Surveys and Questionnaires
  • Voluntary Health Agencies