Organ / Tissue Donation and Transplantation

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In 2008, Canadian Blood Services was tasked with the job of developing three unique, yet inter-connected, organ registries to help improve organ and tissue donation and transplantation (OTDT) opportunities in Canada.

To date, the organization’s OTDT team has developed and launched three lifesaving registries that comprise the overarching Canadian Transplant Registry (CTR): Living Donor Paired Exchange (LDPE), National Organ Waitlist (NOW), and, most recently, Highly Sensitized Patient (HSP).

For a closer look at progress over the first five years, Pulse speaks with Sean Delaney, director of organ registries and a kidney transplant recipient. As a Canadian Blood Services’ director, Sean is one of two leaders currently responsible for the development of these registries, focusing on stakeholder engagement, policy development, and data analysis.

As a transplant recipient, Sean has personally experienced the life changing power of organ donation. Born with an internal blockage that destroyed his left kidney and a portion of his right, Sean experienced a childhood rife with doctor’s appointments, blood tests, and surgeries. At the age of 27, however, his remaining kidney began to fail. He needed a transplant. Thankfully, his younger brother was a match and Sean received a new kidney and a new lease on life, solidifying his future career in public health and policy development.

Pulse: What were the main goals in forming the Canadian Transplant Registry?
Sean: There were quite a few goals. We wanted to help support the national community in better allocating organs inter-provincially and to help develop best practices for allocating organs within provinces. Ultimately, we want to increase transplantation opportunities for people on organ waitlists and to bring more transparency to the Canadian system for organ donation and transplantation by having much better and more validated data for the country.

Pulse: The CTR is comprised of three inter-connected, specialized registries. What makes each registry unique?
Sean: Our newest registry, HSP, represents the first official interprovincial sharing agreement for kidneys in Canada. This registry exists to help people who are highly unlikely to find a transplant opportunity within their local province due to one or more past events such as blood transfusions, pregnancies, and failed organ transplants. These events can cause a patient to build up sensitizing antibodies, making it more difficult to find a matching organ. By giving these patients access to the entire donor pool in Canada, we greatly increase their chances of finding an acceptable match.

The LDPE registry was created to improve transplant and donation opportunities for patients who have a living donor willing to donate to them but aren’t able to because of incompatible blood groups or antibodies. I was very fortunate to have the very first person tested, my brother, deemed a good match right away. We created an opportunity for patients and donors to be entered into the registry as an incompatible pair, so they can be proposed to donate to and receive from other similar incompatible pairs. Through LDPE, we have seen tremendous success as a country in helping to find new transplant opportunities that were never before possible.

Finally, the NOW represents a huge leap forward in waitlisting patients for the sake of supporting interprovincial sharing. Prior to the NOW, programs had to allocate organs using a paper-based list that was faxed out once a week. With web-based technology, the community now has a secure, 24/7, always up-to-date listing of patients from across the country to assist in their allocating of donor organs. The additional advantage brought with the NOW was the ability to finally see the entire country’s waitlist in real-time, something that had never before been possible.

Pulse: How do these registries help Canadians and improve our health care system?
Sean: If you think of each person who receives a new organ, it means a return to life, a return to their families, and often a return to work. For patients to leave intensive care units and dialysis clinics, it equals a much lower cost care overall. If you multiply these savings by the more than 200 people who have already been transplanted through our LDPE registry, for example, that’s a tremendous cost savings and a whole lot of people returning to more active personal and work lives.

Pulse: What has been your biggest challenge in launching three national registries in just five years?
Sean: There’s a learning curve in working with so many different stakeholders. We’re breaking ground that no other agency in Canada has had to do before. Working on coordinated planning with governments and health providers across the country is complex but necessary; we’re working with hospitals, organ transplant centres, and provincial governments all at once and making sure that everybody is ready to move forward.

Pulse: What are your team’s proudest accomplishments?
Sean: We’ve had some amazing milestones along the way. We had a large celebration when the LDPE reached 100 transplants, and now we’ve surpassed 200. The first time we saw a patient listed, it was a powerful reminder that not only did we build an information system, but we built something that can offer hope and opportunity to families with very real and desperate needs.

Pulse: What’s next for OTDT in Canada?
Sean: Because this is such a new area, we know that we are still at the start of a new path. There is a list of enhancements we want to bring forward to continually evolve and improve these registries and the overall collaborative work our OTDT team performs on the national stage. We are working with our funders constantly to ensure we direct our energies to priority areas that will have the greatest impact. Enhancing donation and transplant data for the country will be a top priority to evolve over the coming few years for my immediate team, as will continuing to evolve the LDPE registry based on nearly four years of experience.

Pulse: As a kidney transplant recipient, what has it meant to you to be able to improve Canada’s OTDT system?
Sean: There are days that can be very hard, and conversations about patients suffering waiting for lifesaving transplants. As I’m months away from my 15-year transplant anniversary myself, I can see a future where I will need another transplant one day and need the very lists that I have had a small hand in creating. But to see the milestones that we’ve accomplished, it does make the tough days worthwhile. It really is all worth it in the end to know that hundreds of people have already benefitted from the work I helped to lead.

For more information on Canadian Blood Services’ organ and tissue donation and transplantation programs, visit www.organsandtissues.ca.

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