Kearns G M, Messner R P, Behrens T W
Department of Medicine, University of Minnesota Medical School, Minneapolis 55455, USA.
J Rheumatol. 1998 Mar;25(3):482-5.
To recruit a large cohort of sibling pairs with systemic lupus erythematosus (SLE) as a clinical and biologic resource for genetic studies in SLE.
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.
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.
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.
招募大量系统性红斑狼疮（SLE）同胞对，作为SLE基因研究的临床和生物学资源。
采用多种互补方法来识别合适的家庭。该研究在美国狼疮基金会和关节炎基金会的时事通讯上做了广告。传单被邮寄给美国各地的250名临床风湿病学家以及狼疮基金会的当地分支机构。所有广告都显示了一个免费电话号码，供感兴趣的患者联系我们团队。然后由一名大学风湿病学家通过电话面试对患者进行筛查，随后与主治医生通过电话核实其诊断。通过回顾病历记录来确认通过电话面试获得的临床数据的准确性。
在3年时间里，通过电话对约1400名受试者进行了筛查。在对受试者及其医生进行访谈后，招募了179个家庭，其中至少有2名同胞患有确诊的SLE。基于电话访谈，为研究中的所有患者建立了详细的临床、人口统计学和家族史数据库。超过80%的研究受试者在临床实践中接受风湿病学家的SLE治疗。
我们发现，风湿病学家通过电话确认或排除SLE诊断是可靠的。通过有针对性的患者广告，随后进行医生间访谈，是一种高效且准确的方法，可用于招募SLE患者进行大型基因研究，并且可能适用于其他风湿病的研究。
