There are hundreds of genetic mutations that can cause blindness, making number crunching extremely important when it comes to curing blindness.
MyRetinaTracker.org is attempting to tackle the massive amount of data that needs to be collected to cure blindness and is crowdsourcing the data from those who suffer from blindness themselves.
"My Retina Tracker is a free online registry provided by the Foundation Fighting Blindness as part of its mission to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of inherited retinal degenerative diseases," says the company on its website.
To date, researchers and doctors have only found cures for a few of the ailments that cause blindness. These cures involve things like cornea transplants and even lens replacements. Doctors cannot, however, replace the retina, which is a layer of cells that resides at the back of the eyeball, turning light captured from the eye into signals that the brain can understand.
Among the most challenging problems to cure include 20 rare genetic diseases like retinitis pigmentosa, which kills cells in the retina and then works its way into the eyeball. Any single gene of 84 can cause this disease. While there are a huge number of possible mutations that could cause blindness, however, there aren't so many patients for each disease, making it even more important that My Retina Tracker is able to collect as much data as possible.
My Retina Tracker was first launched by Foundation Fighting Blindness last year to almost no media coverage. Despite this, it was able to gain around 2,600 participants in the past year.
FFB is now making a deal with a marketing agency in an attempt to recruit as many people as possible, with the campaign set to launch in the fall. While the foundation does not need all 200,000 people with rare retinal diseases to participate, if it is able to get between 40,000 and 80,000, the company says that it would feel good about the data it could collect.
My Retina Tracker also has a number of benefits for patients. For example, the registry gives them a central place to store their medical records, which can be accessed from anywhere. Not only that, but the big incentive is the possibility that patients might be contacted by doctors and researchers conducting medical trials. The system will also take subjective information from patients, such as how their disease affects their day-to-day life, and whatever else they might want to mention.
Via: FastCompany
Photo: Peter Sheik | Flickr
