Diabetes Registry

The Diabetes Research Group at the KPNC Division of Research maintains and annually updates a registry of all members with diabetes in the Northern California region of Kaiser Permanente. The size of the registry has grown from ~65,000 at its establishment in 1993 to over 200,000 active health plan members with diabetes in 2006. New cases of diabetes are identified annually using a passive surveillance system applied to relevant administrative databases. These sources of identification include pharmacies (prescriptions for diabetic medications), laboratories (HbA1c≥7.0%), and outpatient, emergency room and hospitalization records listing a diagnosis of diabetes. The registry has been estimated to be 98% sensitive for diagnosed diabetes (compared with survey-derived self-reports in 2000). Self-reported data (n= ~77,000) from a health survey (mailed questionnaire or a computer-assisted telephone interview) conducted during 1994-97 (83% response rate) include information on ethnicity, duration and type of diabetes, education, self-management and lifestyle factors, and diabetes family history. The registry is ethnically diverse, including 60% non-Hispanic whites, 12% Hispanic, 12% African American, 12% Asian, and 3% Native American patients.

The Diabetes Registry has facilitated a series of longitudinal epidemiologic and health services research projects. The Diabetes Research Group has published on the costs associated with diabetes, effectiveness of Metformin, the impact of hormone replacement therapy on glycemic control, genetic epidemiology of type 2 diabetes, efficacy of and barriers to self-monitoring of blood glucose, predictive models for diabetes related complications, and ethnic disparities in the complications of diabetes. Recently, the registry has been expanded to include incident cases of gestational diabetes and longitudinal follow-up.