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

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.