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CANADIAN
TRANSPLANT
REGISTRY

Drawing on our expertise in the area of organ and tissue donation and transplantation (OTDT), Canadian Blood Services is responsible for operating the Canadian Transplant Registry (CTR). A web-based resource hub for the entire country, the CTR provides critical real-time data and information through three programs for organ listing and sharing: the Kidney Paired Donation program, the National Organ Waitlist and the Highly Sensitized Patient program.

Through the CTR and its interprovincial programs and services, transplant programs have access to the information they need to list potential organ donors in their provinces; to match and allocate available organs among patients anywhere in Canada; and to monitor patients’ post-transplant outcomes. CTR databases also enable comprehensive national reporting on organ donation and transplantation. Over the past year we continued to enhance our data analytics services to help Canada’s OTDT system operators, administrators and researchers refine performance reporting and map out future strategy.

In managing the technical infrastructure for a national OTDT registry, Canadian Blood Services is guided by interprovincial policy, as well as evidence-based leading practices that have been developed collaboratively. We help to ensure a more consistent, accurate system by implementing procedures and strategies that all parties have agreed to. And we bring this same balance of system management and policy expertise to ongoing discussions around the need for a pan-Canadian clinical governance framework for OTDT.

FOCAL POINT:  EVOLVING A NATIONAL OTDT FRAMEWORK
FOCAL POINT:  EVOLVING A NATIONAL OTDT FRAMEWORK

In 2008 federal, provincial and territorial governments (except Quebec) invited Canadian Blood Services to play a leading role in Canada’s organ and tissue donation and transplantation (OTDT) system. As a result, we helped to develop a national strategy and define roles and responsibilities. We built, and continue to manage, the data collection and reporting infrastructure that supports the Canadian Transplant Registry and its three interprovincial organ transplantation programs: the Kidney Paired Donation program, the National Organ Waitlist and the Highly Sensitized Patient program. We coordinate and generate timely, reliable network-wide reporting. And we collaborate on initiatives to develop leading OTDT practices, and to make the latest knowledge available through professional and public education programs.

Taken together, our various responsibilities reflect a commitment to continuous system improvement that we share with all of our OTDT partners nationwide — including (through a separate agreement) the Quebec government. This work is an excellent example of innovative Canadian partnership. However, as the system evolves, there is a need for a governance framework that will further clarify responsibilities and accountability between programs, provincial authorities and Canadian Blood Services, especially in the areas of interprovincial organ sharing and data reporting. We have a critical role to play in developing and implementing this framework. Discussions have started with organ procurement organizations, health ministries and transplant and donation programs on how to bring greater transparency and accountability to the system for the benefit of Canadian patients.

Kathleen and Gordon Stringer

When Kathleen and Gordon Stringer’s 17-year-old daughter, Rowan, died from Second Impact Syndrome following a concussion during a rugby match in 2013, there was no question whether they would donate her organs. Rowan had signed her organ donor card and discussed her wishes with her family; something the Stringers believe is critically important.