The role of the clinical rheumatologist in the establishment of a large sibling pair resource for systemic lupus erythematosus.

OBJECTIVE: To recruit a large cohort of sibling pairs with systemic lupus erythematosus (SLE) as a clinical and biologic resource for genetic studies in SLE.
METHODS: Complementary approaches were used to identify suitable families. The study was advertised in the newsletters of the Lupus Foundation of America and the Arthritis Foundation. Fliers were mailed to 250 clinical rheumatologists across the US, as well as to the local branches of the Lupus Foundation. All advertisements displayed a toll-free telephone number for interested patients to contact our group. Patients were then screened in a telephone interview by a university rheumatologist and their diagnosis was subsequently verified by telephone with the treating physician. Retrospective review of medical records was used to confirm the accuracy of the clinical data obtained by telephone interview.
RESULTS: About 1400 subjects were screened by telephone over a 3 year period. After interviews with subjects and their physicians, 179 families were recruited in which at least 2 siblings have definite SLE. Based on the telephone interviews, a detailed clinical, demographic, and family history database was established for all patients in the study. Over 80% of the study subjects receive their SLE care from rheumatologists in clinical practice.
CONCLUSION: We found that rheumatologists were reliable in confirming or excluding the diagnosis of SLE by telephone. Targeted patient advertising followed by physician-to-physician interviews is a time efficient and accurate method for recruiting patients with SLE for large genetic studies and may be applicable to the study of other rheumatologic conditions.