Best Practices for the Development, Implementation, and Sustainment of Exposure Registries: A Rapid Review

Vollständiger Abstract

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The objective of this rapid review was to synthesize lessons learned from past exposure registries developed in response to environmental and occupational exposure events and provide guidance for the development and implementation of future exposure registries. A rapid review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guidelines and interim guidance for the reporting of rapid reviews. Peer-reviewed articles and gray literature were identified through searches in Ovid MEDLINE, Google Scholar, and official websites. Selected literature focused on U.S.-based registries developed in response to environmental and occupational exposures. A total of 22 documents were retained and analyzed. Existing exposure registries demonstrate the importance of early community engagement, well-defined eligibility criteria, multimodal data collection, and partnerships with health agencies. Key challenges we identified included limited exposure measurement tools, delays in registry implementation, participant mistrust, and difficulties in maintaining long-term follow-up. Strategies to overcome these challenges include the use of community advisory boards, culturally relevant messaging, structured referral systems, and routine data integration with health records. Additionally, our review identified lessons and best practices from prior exposure registries that can inform the implementation of forthcoming registries. Successful registries rely on transparent governance, proactive community engagement, robust follow-up procedures, and integration with existing health systems.