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

J Am Med Inform Assoc. 2024 Apr 3;31(4):1001-1008. doi: 10.1093/jamia/ocae024.

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.

Keywords: clinical research; computer data processing; program; registries; registry science; sustainability.

MeSH terms

  • Data Accuracy*
  • Humans
  • Registries