Frequently Asked Questions
If your question is not answered here, please contact us using the contact form or email us at ohcrn@oicr.on.ca.
For Participants
I want to join OHCRN, but I don’t know if I meet the inclusion criteria.
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 or genetic test result.
I haven’t had genetic testing, can I still register?
At this time, OHCRN is only open for people who have had genetic testing. Please feel free to check back here in the future for any changes to our inclusion criteria.
Is the consent form available in other languages?
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 +1-437-244-3562.
What information will I be asked to provide when registering?
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 clinic or healthcare provider that arranged your genetic test. If you have a copy of your genetic test, you can provide it directly to us through our secure portal. Contact us at ohcrn@oicr.on.ca or +1-437-244-3562 if you have any questions.
What if I don’t remember all my clinical information?
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.
How can I register my child in OHCRN?
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 refer your child once the assessment is completed.
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.
How do I transfer ownership to my child that turned 18?
Please contact our team at ohcrn@oicr.on.ca or +1-437-244-3562 to transfer ownership.
I’m the substitute decision maker for someone who meets inclusion criteria, can I register them in OHCRN?
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.
I didn’t have an OHIP number before and now I have one, what do I do?
OHCRN collects your OHIP number from your clinical records, if available. If your OHIP number was not previously available in your records, please contact us at ohcrn@oicr.on.ca or +1-433-244-3562. We will request your new OHIP number from your doctor.
I got married and changed my name on my OHIP, what do I do?
Please contact our team at ohcrn@oicr.on.ca or +1-433-244-3562 to make this change to your profile.
How does OHCRN use and protect my data?
Please see our Privacy Policy.
I enrolled in OHCRN but I’ve decided I don’t want to be part of it anymore.
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 by calling +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.
For Researchers
When will OHCRN have available data for my study?
OHCRN opened for participant enrollment in late 2024. We will start accepting applications for data access soon. Stay tuned.
What level of data access can I get from OHCRN?
There are multiple levels of data access for researchers:
- Aggregate data
- Record-level, de-identified data
- Identifiable data (provided only in some cases)
Please contact the study team at ohcrn@oicr.on.ca or +1-437-244-3562 for more information on accessing OHCRN data.
Do I need to be part of one of the 20 genetics clinics or 9 genetics labs to request access to participant data for research?
No, access is available to any researcher, provided they have institutional ethics approval and your study receives approval by the necessary OHCRN committees.