International CR Registry (ICRR)
The goal of the ICRR is to enable assessment of cardiac rehabilitation (CR) quality in low-resource settings, with the aim of ultimately improving patient outcomes. Access and equity will be paramount considerations.
We have secured funding from Qatar and York (Canada) Universities for 2 years to initiate and launch the ICRR. We will work with Dendrite to ensure a secure, private registry. We will undertake a series of studies to ensure: (1) the ICRR data dictionary is evidence-based (delphi panel), (2) usability for CR programs is optimized, and (3) participating programs can benchmark themselves against others internationally (with potential future program certification capability).
The protocol has been approved by a research ethics committee. Click here to view this document.
The demo site for the upcoming registry is here: https://demo.e-dendrite.com/crr/
The registry protocol is registered here: clinicaltrials.gov (see ID #NCT04676100)
ICRR Governance
As per the ICRR organizational chart (see below), the ICCR Steering Committee shall be led by an Executive Committee. The co-chairs of the ICRR Executive Committee are Drs. Sherry Grace (ICCPR Past-Chair, Canada) & Karam Turk-Adawi (ICCPR Friend, Qatar).
The steering committee shall be comprised of CR experts from all regions of the globe (6). Members will represent the diversity of disciplines delivering CR. Expertise incorporated includes: policy-making/ implementation science, registries (e.g., best practices, technology, privacy) and research (e.g., open data sharing, epidemiology, health informatics). The patient voice shall be represented in ICRR governance (user group). All members must be committed to upholding ICCPR’s mission, as outlined in our Charter.
As shown below, the steering committee will have 2 regularly-meeting sub-committees (user sub-committee & research), with an ad-hoc group comprised of representatives of other willing CR registries internationally (liaison; https://globalcardiacrehab.com/Other-CR-Registries). Note it is not the intention of ICRR that programs in countries with established registries join the ICRR, but we aim to support programs in countries without established CR registries. By working with our CR registry partners, we can promote best practices, share resources, and harmonize our efforts.
The remit of the ICRR Steering Committee includes: oversight, budget, initial development and launch, sustainability, and ethics/privacy/security. The ICRR Exec will lead these activities with input and approval from the Steering Committee. The steering committee terms of references are available here. Data quality is foremost.
The remit of the user sub-committee is to engage sites to join the registry and support on-boarding, liaise with users for training and to optimize data quality, and provide an avenue for feedback by users for registry improvement. The user group shall also work with interested programs to improve CR quality where low. The user group shall hold a virtual meeting annually with participating programs to report on data quality, benchmarking, among other items of business. The user group shall communicate and support all participating programs shall changes be made to the registry. The sub-committee terms of references are available here.
The research group shall enact policies with regard to research data access and dissemination. Their remit will include data management (including liaising with user sub-committee regarding data quality improvement), data access (see forms here for when register is open to requests: data application form & data access request review form), publications and presentations, and research program administration. The research committee shall oversee an Annual Report and ultimately consider sharing data open access (pending privacy/ security approvals). The sub-committee terms of references are available here.
Inaugural Steering Committee Members (2020-2023)
- Co-Chair: Sherry Grace (Americas; quality improvement; ICCPR Exec)
- Co-Chair: Karam Turk-Adawi (Eastern Mediterranean; research)
- Secretary (trainee)
- Co-Chair of user group: Gabriela Ghisi (Americas; patient education/literacy)
- Co-Chair of user group: Abraham Babu (SEA; PT)
- Chair of research sub-committee: Pamela Seron Silva (Americas; methods expert)
- Other representation: Ssu-Yuan Chen (Western-Pacific; PMR physician)
- Other: Rufus Adedoyin (Africa; PT)
User sub-committee members: Gabriela Ghisi (co-chair, on-boarding), Abraham Babu (co-chair, quality improvement), Rajkumar Mascreen (patient partner), Kirby Kearns (patient partner), Leong Be Kim (Western-Pacific), Priya Chockalingam (South East Asia), Myat Bhone Aung (South East Asia).
Research sub-committee members: Pamela Seron (chair), Martin Heine (Africa), Francisco Lopez Jimenez (Americas), Marta Supervia (Europe) [biostatistician and knowledge user to be named].
Liaison sub-committee members: Jonathan Gallagher, Evangelia Kouidi.
For more information or to get involved, contact the ICRR Secretary at iccpr.icrr@gmail.com.