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 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.


CONCLUSIONS
The LFA-WPC provided a negligible advantage in identifying additional incident lupus cases to those already identified through an established registry.
Fitzgerald
S G
SG
Department of Rehabilitation Science and Technology, School of Health Rehabilitation and Science, University of Pittsburgh, Pennsylvania, USA.
Kwoh
C K
CK
McCarty
D
D
Ramsey-Goldman
R
R
Medsger
T A
TA
Manzi
S
S
D000328:Adult; D016208:Databases, Factual; D005260:Female; D005582:Foundations / Q000706:statistics & numerical data*; D006761:Hospitals / Q000706:statistics & numerical data; D006801:Humans; D015994:Incidence; D008180:Lupus Erythematosus, Systemic / Q000175:diagnosis / Q000453:epidemiology*; D008297:Male; D010414:Pennsylvania / Q000453:epidemiology; D011159:Population Surveillance / Q000379:methods*; D012042:Registries; D012219:Rheumatology / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D014837:Voluntary Health Agencies