Canadian Inherited Retinal Disease Data Registry
Funded since 2020
Aim
The “Canadian Patient Registry for Genetic and Phenotypic Data of Patients with Blindness Due to Inherited Retinal Diseases (IRDs): A Collaboration with Fighting Blindness Canada (FBC)” is designed to be a useful tool for all types of researchers facilitating research on the natural history of retinal dystrophies, clinical trial planning and recruitment, basic science studies, low vision, and the economic impact of blindness studies.
Description
Recording standardized information on patients with retinal degeneration is important to assess different aspects of the diseases such as natural history and burden of disease on a population basis. Importantly, it allows for the identification of patients with a specific clinical and/or molecular diagnosis that may allow for patient eligibility for specific studies, clinical trials, and/or other therapeutic options. To achieve this, a tool is needed to collect concordant phenotype and genetic information on patients with retinal degeneration in Canada. This has led to the development of a medical information database called the Canadian Inherited Retinal Disease (IRD) Patient Data Registry.
Impact
This Canadian registry has a dual purpose, benefiting patients as well as scientists and physicians. This registry will allow scientists and physicians to identify and access specific patient populations for new therapies and identify the burden of disease of these diseases in Canada. This registry will open doors for patients to benefit from potential treatments that are fully approved by Health Canada and the FDA. With continued efforts toward global implementation, we recognize that this registry will be able to connect with potentially eligible study participants.
Accessibility
For researchers who wish to access the registry, please complete the request form available here.
Additional information (registering for the VCC Patient Registry, supporting VCC, bridging patients to clinical trials, etc.) is also available on the Fighting Blindness Canada (FBC)/ Vaincre la Cécité Canada (VCC) website.
Responsible
Robert K. Koenekoop, MD, PhD, FARVO, Clinician-Scientist, Pediatric Ophthalmologist, Chief of Pediatric Ophthalmology and Medical Biologist of Blindness, McGill University Health Centre – Research Institute (MUHC-RI), Senior Regular Investigator, Ocular Genetics Laboratory, MUHC-RI, Glen Site and Professor, Department of Pediatric Surgery, Faculty of Medicine, McGill University.
Contact persons
Robert K. Koenekoop – robkoenekoop@hotmail.com
Data Management Officer: Glenda Vargas – glenda.vargas@muhc.mcgill.ca
Sources of funding
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Vision Health Research Network
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Fighting Blindness Canada
