For Participants
OHCRN is open to adults and children in Ontario who have a known or suspected hereditary cancer predisposition syndrome, regardless of cancer status. A valid OHIP number is needed for some parts of the registry.
When enrolling, please have your health card ready. We will also ask for your name, address, date of birth and some general health questions. Please also be prepared to provide as much information about where you received genetic testing as you can.
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 and the study team will review your clinical information and verify the information is correct and add in more details.
Individuals below 18 years of age will need to be assessed by a member of their health care team during an appointment. Your doctor/genetic counsellor will be able to register you. You can then complete the enrollment and consent process on behalf of your child.
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 +1-416-977-7599. However, it will not be possible to destroy any data already analyzed or processed for research purposes, or information already provided to researchers.
For 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:
- Public portal showing aggregate data visible to everyone
- Approved researcher portal displaying de-identified data and linked cohorts
- 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.