Background
Some people are born with a change in their genes that gives them a higher chance of getting cancer. These gene changes are called mutations and can pass through families.
These individuals have hereditary cancer syndromes and need special screening tests and follow up care by many doctors. Health care standards can differ across Ontario so it can be hard for some to get the care they need.
OHCRN keeps information about the participant, their genes, and any cancers they develop in one secure and localized area. Bringing this data together helps inform research for the benefit of future cancer care.
Participant Enrollment
Participants can be enrolled by their doctor, a member of the OHCRN study team or they can join themselves.
OHCRN is open to all adults and children who:
- Have had germline genetic testing for a known or suspected hereditary cancer predisposition syndrome, regardless of cancer status.
- Are able to consent or have someone who can consent on their behalf
- Have a unique email address
To Enroll:
- Register through the online patient portal at www.OHCRN.ca
- Create an account by providing full name, phone number, date of birth and consent to be contacted by OHCRN study team
- Verify account over email
- Your email address will be your username and you need to create a unique password to log into your account
Please refer to the FAQs if you want to enroll someone who is under the age of 18 or who requires a substitute decision maker.
If you are unable to complete the online registration process, please contact ohcrn@oicr.on.ca and a member of the study team will be able to help.
Resources
There are many advocacy groups across Canada for patients with hereditary cancer syndromes, including: