Diagnostic certainty of a voluntary bipolar disorder case registry

Background: Strategies for identifying and recruiting persons with bipolar disorder are of importance as interest in studying this relatively uncommon , but highly disabling illness increases. The development and implementatio n of a bipolar disorder case registry and the assessment of diagnostic cert ainly of the resulting sample are described. Methods: Eight hundred and fou r individuals who self-reported a history of bipolar disorder were recruite d. Telephone interviewers gathered demographic information and clinical, me dical and treatment history information. One hundred randomly-selected regi strants completed an in-person structured diagnostic interview. Self-report of diagnosis was compared to the results of the diagnostic interview. Resu lts: Ninety three percent of registrants interviewed met criteria for a lif etime bipolar spectrum diagnosis; of these, 76.3% were diagnosed with bipol ar I disorder. Agreement between self-reported and SCID diagnoses was 93%, indicating that self-report of a bipolar diagnosis is highly reliable. Two- thirds had experienced at least one other Lifetime Axis I diagnosis, with s ubstance abuse/dependence (55.9%) and panic disorder (19.4%) the most commo n comorbidities. Limitations: Since nearly all of the sample have previousl y been diagnosed as having bipolar disorder by a professional, the sample's representativeness of the population as a whole may be somewhat limited. C onclusions: Persons with bipolar disorder can accurately identify themselve s as having the disorder via a telephone interview, indicating that a case registry method is a useful strategy for recruiting very large samples of p ersons with this disorder. Such large samples will allow for further study of treatment variations among patient subgroups, of pathways to treatment, and of the effectiveness of new treatments. (C) 1999 Elsevier Science B.V. All rights reserved.