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

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.