Patient Registry

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 IRD Patient Registry is a secure medical database where Canadians may submit information about their inherited retinal disease. This information will be used to connect participants to clinical trials and research. In addition, the patient registry provides information about the number of Canadians living with IRDs which is crucial to drive sight saving research, influence health care decision making and improve access to new treatments.

Access our patient registry primer.

The Patient Registry has been made possible, in part, by funds received from Johnson & Johnson, MeiraGTx, and Novartis. Fighting Blindness Canada is solely accountable for the information shared on the Patient Registry pages. This content has been developed without the influence of our funding partners.

Currently our patient registry is exclusive to people with inherited retinal diseases. In the future, we hope to include people with other blinding eye diseases. To stay connected, sign up for our e-newsletter here.

Click here to learn more about our funded research.

If you have any questions or concerns about our patient registry, please contact us at 1-888-626-2995 or

Important Things To Consider

By filling out this online form, you are not enroling 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 to start the enrolment process.

Once you have filled out the form, you will receive an email with the contact information for your closest enrolment centre. You must contact the enrolment centre yourself. The enrolment centre will send you a consent form to fill out. Once you have signed and returned your consent form. you are considered enrolled in the patient registry.

You do not have to get genetic testing to enrol in the Patient Registry. However, getting your genetic testing is the best way to find out if there is a clinical trial for you.

If you have any questions, or would like help filling out this form, contact us at 1-888-626-2995 or

Join the Fight!

Learn how your support is helping to bring a future without blindness into focus! Be the first to learn about the latest breakthroughs in vision research and events in your community by subscribing to our e-newsletter that lands in inboxes the beginning of each month.

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