One of the biggest challenges in overcoming rare retinal diseases is, well, that they’re rare. There’s limited information about the conditions in humans, making it difficult for researchers to understand why they cause blindness and develop vision-saving treatments.
Collecting retinal-disease data, and making it available to scientists, is one of the major driving forces behind the development of My Retina Tracker, the Foundation’s free, secure and confidential registry for people with inherited retinal diseases. One thing I do want to make clear—the data collected is protected and only shared, with each patient’s consent, for legitimate research purposes. Only disease-related data can be accessed by researchers; no personal information is shared. FFB staff will notify registrants if they match a researcher’s clinical-trial criteria.
When the Foundation launched My Retina Tracker in 2014, we knew investigators and companies would want the data provided by patients and families. And even though we’re still in a growth phase in terms of registration, it’s remarkable how many companies and investigators are already asking for disease information.
In our first year of operation alone, we’ve had data inquiries from more than eight companies and applications for data access from 10 individual researchers. Many of the companies are interested in identifying people who may be eligible for participation in clinical studies launching soon. They’re also looking at patient and disease numbers to determine if future therapy development efforts and clinical trials are warranted.
For example, Applied Genetic Technologies Corporation, a developer of retinal-disease gene therapies asked us to query My Retina Tracker to identify potential candidates for its gene-therapy clinical trial for X-linked retinoschisis. The company also intends to initiate studies for achromatopsia (day blindness) and X-linked retinitis pigmentosa in the not-too-distant future.
Looking forward, both retinal-disease patients and FFB still have a lot of work ahead to populate My Retina Tracker; we need thousands of more registrants. FFB’s job is to get the word out.
But, ultimately, it is up to the affected individuals and families to register and provide as much current disease information as possible. While genetic and vision test results are valuable, any information from patients and their blood-related family members (both affected and unaffected) is helpful. Registrants can always sign up and add more information later, as it becomes available.
Please send an e-mail to firstname.lastname@example.org if you have any questions or need registration assistance.
Thanks for helping drive sight-saving research.