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

Authors :
Labkoff SE
Quintana Y
Rozenblit L
Source :
Journal of the American Medical Informatics Association : JAMIA [J Am Med Inform Assoc] 2024 Apr 03; Vol. 31 (4), pp. 1001-1008.
Publication Year :
2024

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.<br />Materials and Methods: The article provides an outline of the technology roles and responsibilities needed for successful implementations of next-generation registries.<br />Results: We propose a framework for the planning, construction, maintenance, and sustainability of this new registry type.<br />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.<br />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.<br /> (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association.)

Subjects

Subjects :
Humans
Registries
Data Accuracy

Details

Language :
English
ISSN :
1527-974X
Volume :
31
Issue :
4
Database :
MEDLINE
Journal :
Journal of the American Medical Informatics Association : JAMIA
Publication Type :
Academic Journal
Accession number :
38400744
Full Text :
https://doi.org/10.1093/jamia/ocae024