Frequently Asked Questions

OHCRN is open to adults and children in Ontario who have a known or suspected hereditary cancer predisposition syndrome, and have undergone genetic testing. Individuals are eligible to join regardless of cancer status. A valid OHIP number is needed for some parts of the registry.

The consent form is currently only available in English and French, but we are working on translations to other languages. If you prefer the French consent form or require translation services, please contact the study team at OHCRN@oicr.on.ca or call +1-437-244-3562.

We will ask for your name, phone number, postal code, date of birth and some general health questions. Be prepared to provide information regarding the facility or provider that arranged your genetic test. If you have a copy of your genetic test, you can provide it directly to us through a secure link. Contact us for more information.

At this time, OHCRN enrolment is only for people who have had genetic testing. Please feel free to check back here in the future for any changes to inclusion criteria.

That’s ok! Complete as much as you can. The study team will review your clinical information and verify the information is correct and add in more details. We may request records on your behalf with your consent.

Individuals below 18 years of age will need to be assessed by a member of their health care team to determine their capacity to provide consent or assent. Your doctor/genetic counsellor will be able to register your child accordingly.

If your child is not able to consent for themselves, upon registration by the doctor/genetic counsellor, you can complete the enrollment and consent process on behalf of your child. We will contact you to transfer your child’s account to them when they turn 18 or earlier if we are notified by their health care team that they have the capacity to provide consent on their own. Your child will need to complete the consent process again.

Every participant requires a unique email address to register. If you are also registering in OHCRN, a different email address must be used during your appointment and when signing up your child.

Please contact our clinical research coordinator directly to make this change at ohcrn@oicr.on.ca.

Yes. Individuals who do not have the capacity to provide informed consent for themselves can be registered by their substitute decision maker.

Following the completion of consent, we will contact you regarding the record of disability status and the use of substitute decision maker. We will also contact the referring medical doctor or genetic counsellor to verify the identity of the participant and the substitute decision maker.

Please contact our clinical research coordinator directly to add an OHIP number to your account ohcrn@oicr.on.ca.

Please contact our clinical research coordinator directly to make this change at ohcrn@oicr.on.ca.

You can withdraw your consent at any time without impacting your current medical care by contacting our study team at OHCRN@oicr.on.ca or call +1-437-244-3562. However, it will not be possible to destroy any data already analyzed or processed for research purposes, or information already provided to researchers.

We expect participant enrollment to be open in early 2025 and aim to have researchers apply to OHCRN in mid 2025.

There will be multiple levels of data access for future research studies. Three levels have been identified thus far:

1. Public portal showing aggregate data visible to everyone
2. Approved researcher portal displaying de-identified data and linked cohorts
3. Patient level data which gives participants access to their own information and access to clinical trials

No, access is available to anyone, provided they have institutional ethics approval and your study receives approval by the necessary OHCRN sub-committees.