The costs, cost-effectiveness and methods for evaluating clinical registries: a systematic scoping review

Abstract

Background: 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 synthesise existing evidence on the costs, cost-effectiveness, and methods used in the economic evaluation of clinical registries.

Methods: 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 grey literature reporting registry costs. Data were extracted and summarised descriptively. Methodological quality was assessed using the Consolidated Health Economic Evaluation Reporting Standards (CHEERS), the Joanna Briggs Institute (JBI) checklist for economic evaluations, and the Cost-of-Illness (COI) checklist for cost analyses.

Findings: Twenty-two primary studies and eleven grey literature sources were included. Six full economic evaluations demonstrated that registries were cost-effective or cost-saving, with reported returns on investment ranging from 1·5 to over 2,250 per £1 invested. Sixteen cost-only studies and eleven grey literature reports provided costs across diverse registry types. Cost patterns showed consistent economies of scale, with higher per-patient costs in smaller registries and greater efficiencies in larger or national programmes. Equity-focused analyses were rare, only one study examined subgroup impacts.

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

Keywords: Economic evaluation, Clinical registries, Costs, Cost-effectiveness, Registry-based studies, Health economics