{Reference Type}: Journal Article
{Title}: Identifying the capabilities for creating next-generation registries: a guide for data leaders and a case for "registry science".
{Author}: Labkoff SE;Quintana Y;Rozenblit L;
{Journal}: J Am Med Inform Assoc
{Volume}: 31
{Issue}: 4
{Year}: 2024 04 3
{Factor}: 7.942
{DOI}: 10.1093/jamia/ocae024
{Abstract}: 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.
The article provides an outline of the technology roles and responsibilities needed for successful implementations of next-generation registries.
We propose a framework for the planning, construction, maintenance, and sustainability of this new registry type.
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.
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.