Objectives In Canada, there is growing interest in the use of registries for hazard and disease surveillance because they provide an opportunity for primary prevention. Registry data can also be a valuable tool for epidemiology. Here we report the strengths and limitations of using exposure registry data for epidemiology.
Method Eight exposure registries were reviewed: five from Canada, two from the USA and one from Finland. They were compared based on overall goals, exposure information, registration, recruitment, and health information collected. The potential use of registry data in epidemiology was evaluated. Key considerations for designing a registry that facilitates secondary data use were identified.
Results The eight registries varied significantly. Data from four had been previously used in epidemiology. In three cases exposure measurements were available within the registry; in one, health information was also collected. Registries that have mandatory registration are more likely to contain sufficient data for use in epidemiological studies in contrast to voluntary registries that may fail to capture a large or representative portion of the exposed population. In order to permit later linkage of registry data with health information, consent must be obtained in advance and privacy legislation must be taken into consideration.
Conclusions Most exposure registries are not designed with secondary data uses in mind and, as a result, the use of exposure registry data in epidemiological studies can be problematic. Given the large investment involved in launching a new registry, opportunities to leverage the data for epidemiological purposes should be explored in the planning stages.
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