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Q & A: How does the Canadian kidney exchange work?

TORONTO- The need for organs for transplant in Canada is still greater than the supply, according to a report released Monday.

In 2010, there were 2,103 solid organ transplants from 557 living donors and 465 deceased donors. This is similar to 2006 donation data, despite a growing demand in the last six years.

The report focuses largely on donations of kidneys, liver, heart, lungs and pancreas. Data from 2010 shows that 229 people died while waiting for organs.

Most patients waiting for a transplant need a kidney. In 2010, only 1,248 out of 3,362 received the kidney transplant they were waiting for.

One resource for Canadians waiting for kidneys is the Living Donor Paired Exchange (LDPE) kidney transplant registry. The LDPE is a partnership between Canadian Blood Services and transplant programs across Canada. The registry facilitates living kidney donations between patients with a willing but incompatible donor and other pairs in the same situation.

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Global News asked Janet Wong, communications specialist with the Canadian Blood Services, to share some information on this registry and how important it is for Canadians in need of a transplant.

How do you sign up for the Living Donor Paired Exchange Kidney Registry?
To join the Living Donor Paired Exchange program, people [including anonymous donors] can contact their nearest transplant program. For Living Transplant programs, visit Canadian Blood Services for the centres and links.

Who can sign up i.e. medical requirements, Canadians only?

Recipients must be Canadian but we will take a donor from outside of Canada if they register as a potential paired exchange. For example, a patient in need of a kidney in Canada may have a cousin or relative from the US register as a paired exchange donor with them. Donors are all required to undergo medical and psychological tests prior to going onto the registry.

How does the registry work?
Transplant program coordinators from across the country access the Living Donor Paired Exchange (LDPE) Registry, an online system, and enter incompatible donor-recipient pairs as well as non-directed donors (a donor who is entered into the registry, unpaired, willing to donate a kidney to anyone in need).

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A complex matching algorithm is run approximately once every three months which compares the medical information on all the pairs and non-directed donors in the Registry and identifies kidney transplant opportunities.

Is this the only national kidney registry in Canada and what is the significance of that?
Yes, it is. Previously, programs or provinces operated their own registry or partnered with another program or province but their pool of potential donors was more limited. Having one national registry means there is a much larger pool of potential donors available to patients across the country, thereby increasing the likelihood of a match.

The Registry is a partnership between Canadian Blood Services and transplant programs across the country, and was launched as a three-province pilot in January 2009. Since then, all other provinces have gradually joined the registry, and with Quebec’s enrollment in October 2010, the initiative has become Canada-wide in scope.

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How long does it take to find a match on the registry?
This is difficult to answer. Matches vary greatly from patient to patient and depend on many variables – how sensitized a patient is (if they’ve had a previous kidney transplant), their HLA (Human Leukocyte Antigens) tissue and antibody types, matching of donors in the system, etc. Some matches may be found relatively quickly while others may take years before a match is found.

Though it’s called the “paired exchange,” some cases involve more patients. How many people are typically involved?

With the Living Donor Paired Exchange program, we will match up to 10 people in an exchange – 5 donors and 5 recipients.

How many people are currently signed up?
There are currently 550 people in the registry, 281 potential paired donors for 269 recipients.

Why aren’t more people signed up / what concerns might people have?

In order to register, people must sign up via their nearest transplant program. It is not something that one can do from a website, and people are required to undergo full medical and psychological screening to be on the registry. Concerns that people may have would undoubtedly be for their own health. However, medical studies have demonstrated that donors who have donated a kidney have as full, active and healthy a life as those who have not donated a kidney.

Why do we need this registry?
Of the over 30,000 Canadians on dialysis for kidney failure, 3000 will die each year. There are over 4,300 Canadians waiting for an organ, 70 per cent of whom are awaiting a kidney. As per the recent Canadian Organ Replacement Register, in some provinces, waiting time on the kidney list is over five years.

What are the cost benefits to the registry?
It costs about $50,000-$60,000 per year for each patient on dialysis. Kidney transplants help save the health care system about $50,000 per year per patient, one year after transplant.

Are you aware of national registries in Canada specific to other organs?
We are not aware of any other national registries for other organs. Theoretically, such a registry might be investigated for other organs such as livers but nothing concrete has been developed thus far.

For more information about the LDPE program, please visit the Canadian Blood Services Living Donation web page.

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