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Patient Registry

The Patient Registry is for CANADIAN RESIDENTS ONLY.

Fighting Blindness Canada’s Patient Registry is a secure clinical database that connects people living with retinal eye diseases to emerging clinical trials and research. Fighting Blindness Canada will connect you to the appropriate enrolment site.

Enrolment in the Patient Registry provides people living with retinal eye diseases opportunities to participate directly in ground-breaking new studies, as top Canadian researchers draw directly from this database for trial participants.

People with retinitis pigmentosa, Stargardt disease, Leber congenital amaurosis and all other inherited forms of retinal degenerative disease are welcome to participate.

Learn more by reading our FBC Primer: Patient Registry for Inherited Retinal Diseases.

At FBC, our role is to connect you to an appropriate Patient Registry enrolment site. Because of that, we are a “referral site,” not an “enrollment site”.

To enroll in the Patient Registry, start by selecting your region. Once you have consented to join the Patient Registry, a data collection form will be used to collect the standardized information needed by the Patient Registry.

British Columbia
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Alberta
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East Coast

Nova Scotia, New Brunswick, Price Edward Island

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Central

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

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

For more information about the Patient Registry, please fill out the form below.

The Patient Registry is for CANADIAN RESIDENTS ONLY.

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