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

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.