Hello,

I wanted to respond to the question on what CIHI collects on organ transplantation and donation. The Canadian Organ Replacement Register (CORR) at CIHI does collect record-level data for transplant donors and recipients in all provinces in Canada. This includes all solid organ transplants (kidney, heart, liver, lung, pancreas and intestines), but does not include blood/tissue donation or registered organ donors that have not donated an organ.

The CORR collects patient demographics, treatment location, transplant information, clinical outcomes, and the diagnosis for end-stage organ failure. The data can be linked at the patient level to other data holdings with certain unique identifiers (e.g., to hospitalization data). If there is a request for the data, it would be de-identified, though certain stakeholders can have access to identifiable data (e.g., provincial health ministries).

I hope you find this information helpful.

On behalf of Michael Terner

I'm so glad to hear this issue is coming up. I helped design the BC Organ Donor Registry many years ago, so got involved in many of these discussions.

I believe CIHI still captures post-transplant information in a national database, but I'm assuming this data is anonomized.

Most efforts have been dedicated to registering individuals who wish to donate organs, and this information is found in provincial registries (not a national one like in the US), most linked to either Drivers' Licenses (the old way) or Personal Health Card (a much better way). In some provinces, like BC, these two databases are being combined.

As you point out, the next obvious step is to link pre- and post-transplant information to an individual's EHR... this makes so much sense. Will NL be the first to do so? Would love to hear from others on this topic...

Mike.

Hello,

We would like to know if there is an identified value set and domain messages for storing and retrieving Organ Donor information (e.g. Blood Donor, Tissue, etc.).

Also we would like know if anyone is currently collecting this information and displaying it to users.

Thanks,
Sisira
(NL Centre for Health Information)