Patient Registry for Inherited Retinal Diseases
What is FBC’s Patient Registry?
Fighting Blindness Canada’s (FBC) Patient Registry is a secure medical database that collects information about inherited retinal diseases (IRDs) in Canada. It was established in 2004 with the aim of connecting patients with information about clinical trials and vision research in Canada.
How Does It Work?
People with an IRD agree to submit information about their diagnosis to the registry. Information collected includes results from genetic testing and eye examinations, and family eye disease history. This information is stored securely.
Identifying information (e.g. your name) is not included in the registry, and only administrators at your local registry site can access your full medical records. Research ethics boards have reviewed FBC’s Patient Registry protocols and continue to monitor the database to ensure that patient data is secure.
Researchers and organizations studying IRDs can request access to registry data. If granted, they can search the database but cannot access your name or other identifying information.
You may be contacted by your registry site with opportunities to participate in research. Your contact information will never be shared with an outside researcher or organization without your permission.
Why Sign Up?
Joining FBC’s Patient Registry contributes to ground-breaking research and makes it easier to contact individuals when new clinical trials or treatments become available.
Contribute to vision research.
FBC’s Patient Registry can be used to study how IRDs develop, how IRDs can be better diagnosed, and to develop new treatments. For example, a researcher might search the database for the records of people with a particular genetic mutation. They could then determine the average age at which people with this mutation had early signs of disease or major vision loss. This would allow doctors to provide better information to their patients.
Learn about clinical trials.
Researchers conducting clinical trials and natural history studies are encouraged to use the Patient Registry to find participants. Clinical trials usually require very specific groups of participants. For example, participants for a new gene therapy might need to have a particular gene mutation or be a certain age. The registry makes it easier to identify eligible participants.
When they are planning a new trial, a clinical trial leader might search the registry database to understand how many Canadians might be eligible for it. Registry sites may also use the database to identify individuals who may be good candidates for a clinical trial that is recruiting participants. If you are identified, staff from your registry site will contact you about the trial.
Being part of FBC’s Patient Registry does not mean you have to take part in a clinical trial. Rather, if a trial is available for your condition, it will be easier to provide you with information.
Make your voice heard!
When you join the FBC Patient Registry, you demonstrate that there are people in Canada who want and need new treatments.
The Patient Registry helps FBC communicate with government, industry, and community stakeholders about the patient need for new treatments in Canada.
How do I sign up?
If you decide to join, you will enrol at one of the regional registry sites located in hospitals across Canada. Currently, there are registry sites in Halifax, Montreal, Toronto, Edmonton, and Vancouver.
If you are interested in enrolling, fill out the online form on FBC’s Patient Registry page. Once you complete the form you will receive information about which registry site to contact. Your registry site will give you more information and you will have the opportunity to ask questions. You will need to sign a consent form to join the registry.
Once you have consented to join, your information can be entered into the registry database. If your IRD specialist is based at a registry site, they will enter your data into the registry. If your eye doctor is not a member of FBC’s Patient Registry, you will be given a data collection form for them to complete and return.
Do I Need My Genetic Testing Results to Join the Registry?
No. However, you are strongly encouraged to have genetic testing done and to submit these records to the registry. As many trials are gene-specific this information is important if you are interested in participating in research. Learn more about how to get your genetic testing and why it is important.
If you have questions about FBC’s Patient Registry or genetic testing, please contact our Health Information Line at firstname.lastname@example.org or 1.888.626.2995.
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