World's first international cardiac rehabilitation registry

In collaboration with the International Council of Cardiovascular Prevention and Rehabilitation, researchers from York and Qatar Universities have launched the first-of-its-kind International Cardiac Rehabilitation Registry (ICRR) featured today in the journal Global Heart. The new online registry is designed for cardiac rehabilitation programs in low-resource settings and will make it easier for programs to assess the quality of their programs and benchmark them against other programs around the world, thereby improving outcomes for patients.

"Cardiac rehab plays a role in reducing death and hospitalization by 25 per cent and patients have clinically meaningful improvements in function and quality of life," said Sherry Grace, professor in the Faculty of Health at York University. "To ensure that patients get the greatest benefit out of their rehab, international guidelines recommend programs evaluate the quality of their services. The registry enables this, which is particularly important for programs in low- and middle-income countries where they might not have the resources to do this, yet there are so many patients to treat. Through the registry, programs can identify areas where they might be struggling, and the registry team will then support them to improve their processes."

The ICRR was developed using a literature search on registry best practices and a stepwise model. Then, based on recommendations by Core Outcome Set-Standards for Development (COS-STAD), the team underwent a process to identify variables and contacted all available cardiac rehab registries to request their data dictionaries, reviewed cardiac rehab quality indicators and guideline recommendations. Thirty-five unique variables (including patient-reported outcomes) were selected for potential inclusion. Twenty-one purposively identified stakeholders convened a panel to further rate these variables and add additional ones.

"Tackling global issues through partnerships is embedded in Qatar University's strategic plan. Collaboration with York University and the International Council of Cardiovascular Prevention and Rehabilitation will impact chronic disease management worldwide," said Asmaa Al Thani, professor, vice-president for Medical and Health Sciences, Qatar University.

Cardiac rehabilitation is an outpatient chronic disease management program, where a team of experts supports patients to adopt life-saving, heart-health practices such as exercise, healthy eating, medication adherence and stress management. Participation in these programs improves quality of life, as well as reduces hospitalization and death by 20 per cent.

"The registry will also enable international research, so we can better understand the impact of cardiac rehab in countries where it has never been studied, long-term patient outcomes, what cardiac rehab practices are associated with better outcomes, and what quality improvement strategies work," said Dr. Turk-Adawi of Qatar University, co-principal investigator.

Currently, India, Iran, Pakistan and Malaysia also have approved programs participating in the registry, with more finalizing approvals to get started.