The lupus foundation as an additional source for case ascertainment: Developing a community-based lupus registry

Shirley G. Fitzgerald, C. Kent Kwoh, Daniel McCarty, Rosalind Ramsey-Goldman, Thomas A. Medsger, Susan Manzi

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)137-140
Number of pages4
JournalArthritis Care and Research
Volume13
Issue number3
DOIs
StatePublished - 2000

Keywords

  • Incidence
  • Lupus Foundation of America
  • Systemic lupus erythematosus

ASJC Scopus subject areas

  • Rheumatology

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