There are 3 important forms associated with consent, for patients participating in one or more of the inter-provincial organ-sharing programs, that allow their data to be entered in the Canadian Transplant Registry (CTR):
- Completion of the Kidney Paired Donation (KPD) Program Consent form, provides consent to collect, use, disclose and retain personal information, for the purposes described in the form, including entry of their data in the CTR.
- The CTR Consent form provides similar permissions for recipients who are eligible for participation in the Highly Sensitized Patient (HSP) program and are listed on the National Organ Waitlist (NOW) in CTR.
- The CTR Withdrawal of Consent Form is signed only by someone who, going forward, will no longer allow their data to be entered in the CTR. *All historical data will remain.
- A separate CTR consent form is never required for KPD donors or for KPD recipients participating exclusively in the KPD program.
- The only time both KPD and CTR consents are required is if you have a recipient who participates in both the KPD and the HSP/NOW registries. Living Donors never require the CTR consent form as they complete the KPD consent package.
What consent forms are required?
|Participant||KPD Program||HSP or NOW Listing|
|Living Donor/NDAD||Privacy Notice and Consent – KPD Donor|
||Privacy Notice and Consent – KPD Recipient|
||CTR Consent Form|
||Privacy Notice and Consent – KPD Recipient||CTR Consent Form (if not previously completed)|
|Participant who wants to discontinue entry of Data in CTR. (historical data will remain)||CTR Withdrawal of Consent Form||CTR Withdrawal of Consent Form|
- All donors and transplant candidates participating in KPD must sign a KPD consent form. NOTE: The signed KPD form is uploaded in to the KPD Consent area in the Personal Tab in CTR.
- The only time a transplant candidate needs to sign both a KPD and CTR consent form is if they are highly sensitized (HSP) and want to be listed in HSP and also wish to participate in the KPD program with a registered donor.
- All living donors must sign a KPD consent form. A living donor never needs to sign a CTR consent form.
- A CTR Withdrawal of Consent form is never required from someone who no longer wants to participate in the KPD Program. The patient record is simply set to On-hold/Off-List. Once a KPD record is set to Off-List, no further entries are permitted in CTR.
- If a patient no longer wants their data collected and entered in the CTR they are required to complete the CTR Withdrawal of Consent Form. These instances occur rarely. If you are unsure whether a patient should complete this form, please contact the KPD Team for guidance. NOTE: ALL CTR signed consent forms should be forwarded to CTR.