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

Objective. To determine whether the local Lupus Foundation of America (LFA) chapter would provide a unique source of additional lupus incident cases f or a population-based incidence registry of SLE. Methods. We reviewed membership and telephone records from the LFA to ident ify potential lupus cases. These potential cases were compared with the nam es on our previously developed incidence registry. Non-matches were intervi ewed concerning demographic characteristics and the signs and symptoms of l upus. Results. Of the 449 potential lupus cases identified through the LFA Wester n Pennsylvania Chapter (WPC), 108 (24%) were already in the incident lupus registry. Of the remaining unmatched cases, 26 reported a diagnosis of lupu s in Allegheny County between 1985 and 1990. Of these, 5 patients met the c riteria for definite or probable lupus. Conclusion, The LFA-WPC provided a negligible advantage in identifying addi tional incident lupus cases to those already identified through an establis hed registry.