The CCRR research sub-committee is tasked with reviewing and updating the registry data elements dictionary every 2 years. This first time around, given much input has been received from participating programs, a task force was struck to undertake this task and make recommendations for the CCRR research sub-committee, program liaison sub-committee and larger CCRR committee. The task force is comprised of members of the CCRR research and program liaison sub-committees as well as a member of the Canadian Cardiovascular Society (CCS) data dictionary initiative, with methodological expertise. Throughout the month of May, we invite CACPR members to provide input on the CCRR data dictionary 2.0. Comments can be made on the blog, which will be monitored by the chair of the task force, Dr. Todd Duhamel. All comments will be brought to the task force for consideration and action in June.
The process the task force has undertaken was approved by the CCRR research sub-committee. The task force first considered the degree of missingness for each CCRR variable, and deleted those that were not often used. Next, the task force considered the input from users of the CCRR which had been compiled by our previous special projects coordinator over the life of the Registry. Next, we ensured congruence with the CCS core element data definitions. Through Dr. Sherry Grace’s participation, we were also able to ensure assessment of the CCS cardiac rehabilitation quality indicators. Moreover, through her liaison with the American Association of Cardiovascular and Pulmonary Rehabilitation registry as well as the National Audit of Cardiac Rehabilitation in the United Kingdom, we were able to align some of our measurement approaches. Finally, we moved the order of some variables so that it more closely matches the patient journey. We have also added some “missing / not applicable” options so we can have a better sense of what the data is telling us. We have secured some funding from CCS to pay our service provider Cissec to make the approved changes to the Registry over the summer months. We plan to offer a webinar in September about the changes to inform the CACPR community of the outcome of the process. The CCRR program liaison sub-committee will be hosting a meeting regarding CCRR 2.0 in conjunction with the annual CACPR symposium in Vancouver. They are also discussing ways to support contributing programs and on-boarding new programs with migrating to CCRR 2.0. Please also blog about your suggestions to ensure the transition is as smooth as possible!
Thank you in advance for taking the time to provide us with fulsome feedback. We also welcome your input on which elements you would like to see as part of a “minimum data set”. We will engage in these discussions in June.
See below
Click here to download the data dictionary
CACPR 
Simon Bacon said:
This is a really important document and I encourage everyone to read and make comment. Also, just a reminder these will form the basis of the minimum dataset so it is important to get the data dictionary ‘correct’ to start with.
Damian P Redfearn said:
Thanks for asking me to comment on this.
The inclusion of arrhythmia is welcome but in terms of data definition and subsequent analysis and interpretation data definitions on arrhythmia and ablation are needed.
At a minimum capturing data on AF, VT or other would be useful, of course more granularity could be achieved as you wish and think is feasible. The association of AF with heart failure and response to exercise is a hot topic and would add value to your data. In addition the prevalence of PVCs (readily available on any 24 hour holter) or the history of VT are important in linking outcomes. Arrhythmia per se may prove to be a confounding factor in in terms of outcome and will no doubt lead to more data requests. AF has a very high prevalence in HF and is linked with poor outcomes. Prospective collection will help e.g. interpretation of HR and response to exercise. Similarly ablation needs more data…ablation for what? I would suggest a drop down with the following list: AF, Aflutter, VT, PVC, AVNRT, AVRT and AT. This will cover the vast majority of ablation types and help with outcomes.
Good luck with your project.
Regards
Roanne Schmidt said:
Thought-provoking post ! For what it’s worth if others are wanting a a form , We filled out a sample version here
https://goo.gl/GmoQKm.