The Costs, Cost-Effectiveness, and Methods for Evaluating Clinical Registries: A Systematic Scoping Review

Clinical registries are critical components of digital health infrastructure, supporting quality improvement, research, and system performance monitoring. The economic value and cost-effectiveness of registries across clinical areas remain poorly understood. This systematic scoping review aimed to synthesize evidence on the costs, cost-effectiveness, and methods in economic evaluation of clinical registries.

Medline, Embase, CINAHL, and the Cochrane Library were searched from inception to February 2025, for economic evaluations or costing analyses of clinical registries. Eligible studies included full economic evaluations, cost-only studies, and gray literature reporting registry costs. Data were extracted and summarized descriptively. Methodological quality was assessed using the Consolidated Health Economic Evaluation Reporting Standards, the Joanna Briggs Institute checklist for economic evaluations, and the cost-of-illness checklist for cost analyses.

Twenty-two primary studies and 11 gray literature sources were included. Six full economic evaluations demonstrated registries were cost-effective or cost-saving, with reported returns on investment, derived from costs and estimated cost savings, ranging from 1.5 to over 2250 per £1 invested. Sixteen cost-only studies and 11 gray literature reports provided costs across diverse registry types. Cost patterns showed economies of scale, with higher per-patient costs in smaller registries and greater efficiencies in larger or national programs. Equity-focused analyses were rare, only 1 study examined subgroup impacts.

Clinical registries represent strategic, cost-effective investments in digital health systems. Their economic benefits and efficiencies support ongoing national and international investment. Future evaluations should adopt standardized costing methods, integrating equity and distributional analyses to enhance comparability.