The objective of the Canadian Registry for Amyloidosis Research (CRAR) is to improve the understanding of the Canadian amyloidosis landscape. CRAR aims to fill knowledge gaps to improve patient care and monitoring across Canada. 

A multi-stakeholder process was undertaken to develop a consensus dataset for ATTR- and AL-amyloidosis. This process included a review of existing registries, surveys to rank the importance of data items, and an in-person meeting of the CRAR steering committee, comprised of clinical experts in neurology, cardiology, and hematology, and patient organization representatives. Patients and patient organizations supported the development and implementation of a patient-reported dataset.

Consensus registry objectives include understanding real-world care of amyloidosis patients in Canada; defining the impact of treatments on patient outcomes; and empowering the Canadian community while providing a platform for collaborative research.   

Consensus data items include clinic-reported data on disease onset, progression, severity, treatments, and outcomes, as well as patient-reported outcomes. Both prospective and retrospective (including deceased) patient cohorts are included.

Further baseline data will be presented on an initial cohort of patients.

CRAR has been established to collect a prospective and retrospective, longitudinal, multidisciplinary dataset that will help evaluate ATTR and AL amyloidosis care and outcomes. 

CRAR has successfully launched at multiple sites and is expanding to additional specialty amyloidosis centres across Canada. The growth of this program will promote opportunities to perform multi-institutional observational studies that provide real-world efficacy and safety data and inform cost-effectiveness of therapies, while supporting patient recruitment for clinical trials and engaging patients in the collection of outcome data.