There has been growing recognition of the need for diabetes registries to track the incidence and prevalence of this important cause of premature morbidity and mortality. These recent efforts have grown out of the observation that the incidence of type I diabetes shows great variability by place and time leading to the hypothesis that accurate estimates of occurrence may be crucial to determining etiology. One unexplored use of diabetes registry data is the improvement of preconception and prenatal care for diabetic women, It has been recently demonstrated that preconception care is associated with a 12-fold reduction in congenital anomalies, rendering universal preconception care cost-effective. The objective of this proposal is to conduct an inter-disciplinary conference on methodology for design and management of diabetes registries which can be responsive to the potential multiple uses of registry data: surveillance. basic research. estimation of need for services, evaluation of services, and improving accessibility to high quality services. The conference will bring together a small group of experts with experience in diabetes and cancer registry design and management with service administrators and providers who will take a leadership role in the development of an integrated approach to diabetes registry design. The product of the conference will be a guide to the integrated design of diabetes registries which will address multiple uses of the data with special reference to prevention of maternal and infant risk in pregnant diabetics. Significantly, the proposed conference is directly linked to an on-going effort by the Calif. Dept. of Health Services to develop and test methods for a statewide registry for diabetic women with the goal of identifying and referring diabetic women of reproductive age for preconception care and improved prenatal care which can reduce the pregnancy complications known to occur among diabetics. A major feature of the proposed conference is its immediate usefulness to an ongoing program, as well as the opportunity to expand the use of registry data already being collected elsewhere for improved accessibility to needed services. Conference proceedings will be disseminated to both the health services research and the epidemiology community. Participation of the director of the WHO collaborating center for Diabetes Registries & Training as Program Committee chair further ensures international dissemination of findings which may result in a collaborative effort in the development and use of registry data for improvement of health services as well as basic research. Participation of the current and past directors of the Calif. Tumor Registry also ensures transmission of important knowledge from a program with a longer history of operation. This project Is a cost-effective means of facilitating multiple uses of expensive data collections for the improvement of accessibility of quality health services.
