AN EMR-embedded registry platform successfully integrated cardiovascular and cerebrovascular data across 27 disease and procedure specific modules, demonstrating feasibility for large-scale real-world evidence generation and patient reported outcome collection.
Researchers evaluated the implementation of a unified cardiocerebrovascular registry platform designed to address fragmented data systems and improve longitudinal outcome capture in routine clinical care.
The platform was implemented across nine clinical areas and 27 registry modules.
Between 1 January 2014 and 31 May 2026, a total of 2,890,478 outpatient and inpatient cases representing 396,481 patients were recorded.
Electronic medical record (EMR) screening identified 97,584 screening cases corresponding to 80,478 patients who met module specific criteria for registry inclusion.
Confirmed registry entries were generated through routine clinical workflows, specialist review, and procedure-based confirmation processes.
Implementation involved 61 medical experts, alongside data science and administrative personnel, resulting in 64 contributors overall.
The registry infrastructure was designed to support multiple cardiovascular and cerebrovascular conditions within a single framework, enabling data sharing across modules and reducing duplication of effort.
The cardiocerebrovascular registry included 2,633 operationally available variable rows, of which 329 were common variables that could be applied across modules.
Structured data such as laboratory results, medications, procedures, treatments, and hospital utilisation were extracted directly from EMR systems, while variables requiring clinical interpretation were entered through dedicated clinician workflows.
Data quality assessments showed high completeness across evaluated disease areas. In addition, mobile patient reported outcome collection was incorporated into routine care.
During implementation, 58,315 questionnaire administrations were generated among 23,537 unique individuals.
Researchers reported a patient level response rate of 48.8% (11,488 of 23,537 individuals responded).
Response rates were highest among new outpatient visits at 71.9%.
Researchers also implemented cross module event reuse, allowing confirmed clinical events to be shared across relevant disease registries.
A consistency analysis demonstrated 100.0% concordance for selected cross module event pairs.
Governance structures were established through 19 dedicated meetings covering quality control, data access, audit procedures, and long-term management planning.
The authors concluded that the platform was feasible within routine care and could provide infrastructure for clinical monitoring, quality assessment, observational research, patient centred outcome studies, and future registry embedded investigations.
They noted that additional prospective evaluation will be required to assess long term maintenance, linkage completeness, and operational performance across modules.
Reference
Kang D et al. Design and implementation of an EMR-embedded integrated cardio-cerebrovascular registry platform. npj Digit. Med. 2026;DOI:10.1038/s41746-026-03299-6.
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