TY - JOUR
T1 - The lupus foundation as an additional source for case ascertainment
T2 - Developing a community-based lupus registry
AU - Fitzgerald, Shirley G.
AU - Kent Kwoh, C.
AU - McCarty, Daniel
AU - Ramsey-Goldman, Rosalind
AU - Medsger, Thomas A.
AU - Manzi, Susan
PY - 2000
Y1 - 2000
N2 - 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.
AB - 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.
KW - Incidence
KW - Lupus Foundation of America
KW - Systemic lupus erythematosus
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U2 - 10.1002/1529-0131(200006)13:3<137::aid-anr2>3.0.co;2-8
DO - 10.1002/1529-0131(200006)13:3<137::aid-anr2>3.0.co;2-8
M3 - Article
C2 - 14651039
AN - SCOPUS:0033777194
SN - 2151-4658
VL - 13
SP - 137
EP - 140
JO - Arthritis Care and Research
JF - Arthritis Care and Research
IS - 3
ER -