Pilot testing of the International Council of Cardiovascular Prevention and Rehabilitation Registry

Background: The International Council of Cardiovascular Prevention and Rehabilitation developed an International CR Registry (ICRR) to support CR programs in low-resource settings to optimize care provision and patient outcomes. This study assessed: implementation of the ICRR, site data steward experience with on-boarding and data entry, and patient acceptability.

Methods: Multi-method observational pilot involving: (1) analysis of ICRR data from 3 centers (Iran, Pakistan, Qatar) from inception to May 2022, (2) focus group with on-boarded site data stewards (also from Mexico, India), and (3) semi-structured interviews with participating patients.

Results: 567 patients were entered. Based on volumes at each program, 85.6% of patients were entered in ICRR. 99.3% patients approached consented to participate. The average time to enter data at pre and follow-up assessments by source was 6.8-12.6 minutes. Of 22 variables pre-program, completion was 89.5%. Among patients with any follow-up data, of 4 program-reported variables, completion was 99.0% in program completers and 51.5% in non; of 10 patient-reported, variable completion was 97.0% in program completers and 84.8% in non. Proportion of patients with any follow-up data was 84.8% in program completers, with 43.6% of non-completers having any data entered other than completion status. Twelve data stewards participated in the focus group. Main themes were: valuable on-boarding process, data entry, process of engaging patients, and benefits of participation. Thirteen patients were interviewed. Themes were: good understanding of the registry, positive experience providing data, value of lay summary and eagerness for annual assessment.

Conclusions: Feasibility and data quality of ICRR were demonstrated.