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 lu pus erythematosus (SLE) as a clinical and biologic resource for geneti c studies in SLE. Methods. Complementary approaches were used to ident ify suitable families. The study was advertised in the newsletters of the Lupus Foundation of America and the Arthritis Foundation, Fliers w ere mailed to 250 clinical rheumatologists across the US, as well as t o the local branches of the Lupus Foundation. All advertisements displ ayed a toll-free telephone number for interested patients to contact o ur group. Patients were then screened in a telephone interview by a un iversity rheumatologist and their diagnosis was subsequently verified by telephone with the treating physician. Retrospective review of medi cal records was used to confirm the accuracy of the clinical data obta ined by telephone interview. Results. About 1400 subjects were screene d by telephone over a 3 year period. After interviews with subjects an d their physicians, 179 families were recruited in which at least 2 si blings have definite SLE. Based on the telephone interviews, a detaile d clinical, demographic, and family history database was established f or all patients in the study. Over 80% of the study subjects receive t heir SLE care from rheumatologists in clinical practice. Conclusion. W e found that rheumatologists were reliable in confirming or excluding the diagnosis of SLE by telephone. Targeted patient advertising follow ed by physician-to-physician interviews is a time efficient and accura te method for recruiting patients with SLE for large genetic studies a nd may be applicable to the study of other rheumatologic conditions.