Posted by Moishe Alexander

Purpose of the Patient Registry:
Foundation Fighting Blindness-Canada and CIBC have awarded Dr. Héon a grant to develop a National (Canada) Children’s Vision Research Registry, which is a medical information database that will capture patients affected with retinal dystrophies.

The purpose of capturing these patients is to better understand the natural history of retinal dystrophies, standardize clinical assessment, and most importantly identify patients that could be eligible for clinical trials and/or other therapeutic opportunities that may become available in the near future.

This registry has the potential of expanding into a multi-centered project, but for now it will only involve patients at the Hospital for Sick Children (SickKids).

Description of the Research:
The FFB/CIBC Children’s Vision Research Registry is an internet-based medical registry for retinal dystrophies. Retinal dystrophies are a group of genetic eye disorders that affect the retina of the eye. The retina is an important layer at the back of the eye, which picks up light and sends images to the brain. People who have a retinal dystrophy cannot see as well as other people because their retina is not working properly.

You are asked to be part of The FFB/CIBC Children’s Vision Research Registry. This medical database will allow scientists/physicians access to large amount of medical information that will allow them to better understand the natural history of retinal eye disorders such as the one in your family. This project will ultimately provide you and other patients, with retinal eye disorders, the opportunity to be studied by other doctors, which will allow them to determine you eligibility for clinical trials and/or new treatments that may become available in the near future.

No immediate benefit from participating in this study is expected. However, when clinical trials and other therapies become available in the future, your eligibility for treatment will be determined and you will be managed following the standard of care protocols in place at SickKids. If we also find that you are eligible for any new Foundation Fighting Blindness and SickKids Research Ethics Board approved research projects that develop from the FFB/CIBC Children’s Vision Research Registry you will be notified.

You will be informed of any changes made to the study or new information that might affect your willingness to continue to participate in the research.