Identifying the capabilities for creating next-generation registries: a guide for data leaders and a case for "registry science".

Labkoff, Steven E, Yuri Quintana, and Leon Rozenblit. 2024. “Identifying the Capabilities for Creating Next-Generation Registries: A Guide for Data Leaders and a Case for ‘registry Science’.”. Journal of the American Medical Informatics Association : JAMIA 31 (4): 1001-8.

Abstract

OBJECTIVE: The increasing demands for curated, high-quality research data are driving the emergence of a novel registry type. The need to assemble, curate, and export this data grows, and the conventional simplicity of registry models is driving the need for advanced, multimodal data registries-the dawn of the next-generation registry.

MATERIALS AND METHODS: The article provides an outline of the technology roles and responsibilities needed for successful implementations of next-generation registries.

RESULTS: We propose a framework for the planning, construction, maintenance, and sustainability of this new registry type.

DISCUSSION: A rubric of organizational, computational, and human resource needs is discussed in detail, backed by over 40 years of combined in-the-field experiences by the authors.

CONCLUSIONS: A novel field, registry science, within the clinical research informatics domain, has arisen to offer its insights into conceiving, structuring, and sustaining this new breed of tools.

Last updated on 10/20/2025
PubMed