Canada Enrollment Registry
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- Canada Enrollment Registry
The MAC Canada Enrollment Registry serves as Canada’s secure participant enrollment registry for the Montalcino Aortic Consortium (MAC).
The Canadian Enrollment Registry is a secure, password-protected REDCap database hosted on research servers at IWK Health. It does not contain clinical research data. Instead, it securely manages participant enrollment and identifying information within Canada while supporting participation in the international MAC Registry.
MISSION AND FUNCTION OF THE CANADIAN ENROLLMENT REGISTRY
The overarching mission of the Canadian Enrollment Registry is to provide a secure, standardized, and privacy-protected system for enrolling Canadian participants into the Montalcino Aortic Consortium (MAC), while ensuring that personal identifying information remains securely stored within Canada. It facilitates enrollment across participating Canadian centres, supports longitudinal follow-up, and enables high-quality coded data to be contributed to the international MAC Registry for collaborative research.
Each participating Canadian centre maintains access only to its own participants’ identifying information. Personal identifiers never leave Canada and are not entered into the international MAC Registry. Instead, each participant is assigned a unique Study ID that enables de-identified health information related to Heritable Thoracic Aortic Disease (HTAD) is included in the broader MAC Registry, which brings together data from individuals and families around the world.
DATA HARMONIZATION AND QUALITY CONTROL
For patients and families, the registry provides a safe and secure pathway to participate in international research without sharing personal identifying information outside Canada. Every participant contributes to a growing body of knowledge that is improving the diagnosis, treatment, and long-term management of Heritable Thoracic Aortic Disease (HTAD).
INTEGRATION OF CANADIAN DATA INTO THE MAC INTERNATIONAL REGISTRY
The Canadian Enrolment Registry ensures that Canadian patients and families are represented in one of the world’s largest international HTAD research collaborations. Through secure enrolment and coded data sharing, participants help advance discoveries that will improve care for future generations affected by heritable aortic disease.
SECURE AND RESPONSIBLE DATA STEWARDSHIP
The Canadian Participant Enrollment Registry will collect demographic information (e.g., name and date of birth) to generate a unique Study ID. It will also securely store signed consent forms for participation in the registry and, where applicable, consent forms authorizing access to medical records in a password protected RedCAP database.
Medical information will ONLY be shared with the international MAC Registry using the Study ID only. No personal identifiers will be entered into the international MAC Registry. Only non-identifiable health information related to Heritable Thoracic Aortic Disease (HTAD) is included in the broader MAC Registry, which brings together data from individuals and families around the world.
Supporting Scientific Discovery Across MAC
Combining Canadian data with international data makes scientific findings stronger because it allows researchers to learn from a much larger and more diverse group of people. Including people from different regions, healthcare systems, and backgrounds also helps researchers determine whether findings apply broadly or are specific to one population.
The Canadian Enrollment Registry and the broader International MAC registry can compare health outcomes in Canada to health outcomes in other countries. As well it can compare health outcomes between different regions in Canada.
Importance of the MAC Canada Enrollment Registry
Canadians are a unique population, reflecting diverse ethnic backgrounds and including regions with distinctive genetic conditions. Studying Canadian data alongside international data helps ensure that research findings are both broadly applicable and relevant to Canada's diverse population.
Combining Canadian data with international data makes scientific findings stronger because it allows researchers to learn from a much larger and more diverse group of people. Including people from different regions, healthcare systems, and backgrounds also helps researchers determine whether findings apply broadly or are specific to one population.
The Canadian Enrollment Registry and the boarder International MAC registry can compare health outcomes in Canada to health outcomes in other countries. As well it can compare health outcomes between different regions in Canada.