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Identifying the Capabilities for Creating Next-generation Registries: a Guide for Data Leaders and a Case for "registry Science"

Overview
Journal J Am Med Inform Assoc
Publisher Oxford University Press
Specialty Medical Informatics
Date 2024 Feb 24
PMID 38400744
Authors
Steven E Labkoff
Yuri Quintana
Leon Rozenblit
Affiliations
Soon will be listed here.
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.

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