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 is subject to research ethics board approval.
ICRR Variables and Data Dictionary
Dear cardiac rehabilitation (CR) community:
A delphi panel comprised of experts globally (see list below) in CR registries, quality indicators and delivery in low-resource settings has worked together to develop this variable list and data dictionary for the ICRR: click here to access the document.
You will see in the file the source of data (program or patient) in blue font, and assessment point (pre CR, post-CR or 1 year) in yellow highlight. Please note there is also a program survey which assesses structural program indicators (see here) to reduce any redundancy in variables to enter.
The list of variables was first generated by collating variables from existing registries, as listed at the bottom of this page. In a first round, delphi panelist rated each of ~36 variables on several domains and suggested potential additional variables. On a call, consensus was reached on what variables to exclude and add. In a second round, panelists provided input on the definition of each variable, and the indicators for dashboards. A month-long public comment period ensued. In the final list, there are 13 program-reported variables and 16 patient-reported for the ICRR (12 of which are assessed at 3 time points, namely pre-CR, post-CR and 1 year from pre).
Now that the data dictionary is finalized, we will be undertaking usability testing of the draft ICRR, and invite CR programs in low-resource settings to participate in that process. Please contact firstname.lastname@example.org to express your interest in taking part.
We gratefully acknowledge the following panelists for their service in creating this: Drs. Karam Turk-Adawi (co-chair), Mohiul Chowdhury (trainee and secretary), Alexander Harris & Patrick Doherty (NACR UK), Susan Dawkes (BACPR); Simon Attila (EuroCaReds); Marianna Garcia Saldivia (Mexican registry); Robyn Gallagher (Australian registry and QIs; ICCPR Chair), Emma Thomas (Australian registries); Randal Thomas (AACVPR QIs), Margret Leosdottir (SWEDEHEART SEPHIA registries); Evangelia Kouidi (EuroCaReds), Stefan Farsky (Slovak Republic); Jamal Uddin (Bangladesh PT Assoc); Raghdah Aljehani (Saudi Arabia, PMR), Urvi Sheth (India CR), Graciela Gonsalvez (South American CR WG); Masoumeh Sadeghi (Iranian Heart Foundation); Marta Supervia (SORECAR, ESPRM, ISPRM); Claudia Anchique Santos (South American CR WG); Abraham Babu (India, PT, ICRR User Grp chair); Tee Joo Yeo (Singapore), Martin Heine (S. Africa), Jeemon Panniyammakal (India), Rongjing Ding (China)
As per the ICRR organizational chart, 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.
From the outset it is conceived that the steering committee will have 2 regularly-meeting sub-committees (user group & research), with an ad-hoc group comprised of representatives of other CR registries internationally.
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 remit of the user group 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 research group shall develop and enact policies with regard to research data access and dissemination. Their remit will include data management (including liaising with user group regarding data quality improvement), data access, publications and presentations, and research program administration. With regard to data access, the research committee shall oversee ICRR Executive publication of the ICRR initial data, and then consider sharing data open access (pending privacy/ security approvals), or if not develop a process for scientists to apply for and gain access to ICRR data for dissemination to the research community.
Inaugural Members (2020-2023)
For more information or to get involved, contact the ICRR Secretary Dr. Chowdhury at email@example.com.
Other CR Registries
Review of CR registries: https://www.ncbi.nlm.nih.gov/pubmed/28762761 (As of Sept 2020, to our knowledge there are currently registries in the US, UK, China, Swedeheart/Sephia, Austria, Denmark and Japan. Australia and the Philippines are working on national registries, as is ICCPR with the international one.)
UK Registry: http://www.cardiacrehabilitation.org.uk/
Canadian Registry: https://www.hindawi.com/journals/rerp/2015/278979/ (defunct)
American Registry: https://www.aacvpr.org/Registry/Cardiac-Rehab-Registry
European Registry: https://www.ncbi.nlm.nih.gov/pubmed/27863363 (defunct)
Australian Registry: https://clinicalexcellence.qld.gov.au/improvement-exchange/cardiac-outcomes-registry
Danish Registry: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5094528/
Chinese Registry: http://www.cacpr.cn/v3.12/#/login
About the association
The International Council of Cardiovascular Prevention and Rehabilitation (ICCPR) was created in 2010 to bring together associations dedicated to the promotion of cardiovascular disease prevention and cardiac rehabilitation globally. Named Board member from each associations serve on our Council, which meets quarterly. ICCPR is an Associate International Member of the World Heart Federation.
Copyright © 2010 International Council of Cardiovascular Prevention and Rehabilitation (ICCPR). All Rights Reserved.