To make advances in any disease, there needs to be research. And to do research accurately, there needs to be people willing to participate in clinical trials. How then to find these people? When it comes to research on rare retinal diseases, the Foundation Fighting Blindness has an answer: My Retina Tracker.
Here’s how it works: anyone with a retinal degenerative disease (including those under the age of 18, with parental permission) can register on the Tracker. Then they can upload all their clinical information, doctor visits, etc. This “digital file cabinet” gives individuals a way to keep track of their medical care with regards to their retinal condition.
Researchers can then search the database for information on patterns in symptoms, treatment, etc., as part of their continuing study on treatment and cures. Identifying information is scrubbed out, meaning individuals remain anonymous while their disease details and treatments can be used for continuing research.
It also allows researchers to identify potential (anonymous) candidates for clinical trials. Those candidates will then be notified and can choose whether or not to contact the researcher about participating.
The ultimate benefit is better treatment and outcomes for those with retinal degenerative disease. People can begin to sign up here starting now.
To see the full post on the Foundation Fighting Blindness website, go here.
