Patient Registry

The Patient Registry is for CANADIAN RESIDENTS ONLY.

Are you living with an inherited retinal disease? Are you interested in helping to advance research in Canada and in contributing to the development of new treatments and cures? If so, consider enroling in our Patient Registry!

Fighting Blindness Canada’s Patient Registry is a secure medical database that collects information about Canadians living with inherited retinal diseases to connect them to clinical trials and research.

By enroling in the Patient Registry, participants signal their interest in being contacted to:

  • Participate in clinical trials
  • Help improve patient care
  • Inform health policy
  • Drive sight-saving research

Click here to learn more about the Patient Registry.

If you would like to register for the Patient Registry, start by selecting your region from the list below.

Important things to consider:

  • By filling out this online form, you are not enroling directly in the Patient Registry. Rather, you are expressing interest in the Registry and allowing Fighting Blindness Canada to contact you with more information. This is a necessary first step that will begin the process of enroling you.
  • Once you have filled out our form, you will be emailed with contact information for an enrolment centre coordinator. You must contact the enrolment centre coordinator yourself. Once you do this, your coordinator will provide you with a consent form that you fill out and send to them. Once you have signed your consent form. you are considered enroled.
  • You do not have to get genetic testing to enrol in the Patient Registry. Getting your genetic testing is the best way to find out if there is a clinical trial for you. We are here to help you complete this step of your journey.
  • Click here to learn more about genetic testing.
  • You can take your name off the Patient Registry at any time.
  • Please call us if you cannot fill out this form.

We are here to help! Call or email our Health Information Line to learn more or to find assistance in registering for our Patient Registry.

Contact information


Phone: 1-888-626-2995

British Columbia
Learn More
Learn More
East Coast

Nova Scotia, New Brunswick, Price Edward Island

Learn More

Ontario, Saskatchewan, Manitoba, Quebec, Newfoundland & Labrador, Northwest Territories, Nunavut, Yukon

Learn More

Watch Dr. Elise Héon speak about the importance of genetic diagnosis for patients with inherited retinal diseases.

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