ICRR for patients
Dear cardiac rehabilitation participant:
You have likely come to this site because your cardiac rehabilitation program participates in ICCPR’s International Cardiac Rehab Registry (ICRR). This registry is used to collect information about you before your program, after, and every year thereafter. You can learn more about patient registries here. By participating in the registry, your program is working towards ensuring their services for you are the best they can be. We are very grateful you may be willing to have your information shared with the registry.
The ICRR aims to:
- Improve rehabilitation care
- Influence health policy
- Support generation of new knowledge
The information that is shared with the registry does not have your name. Information that is shared by the program includes: when you started the program, your cardiovascular history, the program services you receive, and the results of your intake and discharge assessments (such as exercise tests and blood work).You may be asked to provide information for the registry, such as your health habits, knowledge, symptoms, well-being, and work status. If so, you may receive a consent form similar to this one, with more information: click here. You can always check here for ways to opt-out later, access your information etc.
We hope that you attend all your sessions, but even if you can’t, we would like to know how you are doing and hope you will share your information with the registry. Patients providing data before and at the end of their program (or when they would have ended if they could not complete it) may receive a lay summary of their progress (see template here).
Programs can see on their registry dashboards how well patients are improving in controlling heart risk factors like blood pressure, cholesterol, and obesity. They can track your session adherence rates, and work with the ICRR team to implement strategies to support patients to better engage with the program and optimize their health where needed. They will learn what your information gaps are, how you are doing taking your heart pills, and if you are struggling with heart symptoms like shortness of breath or chest pain, for example. We will check in with you each year to learn if you have had another health problem. We use this information to improve services, so patients can live the longest, high-quality lives possible.
If you would like to request access to the data you have contributed to the registry at any time, please complete the brief request form here: http://icrr.e-dendrite.com/sar.html
If you would like to stop contributing data or withdraw your contributed data from the registry at any time, please contact us at: iccpr.icrr@gmail.com
The Patient Voice in the Registry:
Patient perspectives were considered in the development of the registry variable list and outcome measures. Patients have a voice on ICRR's user sub-committee. We are grateful to our initial patient partners Rajkumar Mascreen (India) and Kirby Kearns (Qatar).
Lay summaries of annual registry reports may be shared with interested patients.
If you would like to give us input at any time or have questions, email us at iccpr.icrr@gmail.com. We want to make sure your voice is heard!
p.s. If you would like to assess your barriers to attending cardiac rehab, see our anonymous survey here, where you can get suggestions on how to address your top barriers: https://globalcardiacrehab.com/For-Patients