One of the big challenges with rare retinal diseases is, well, they’re rare. That makes it hard for researchers to find disease-causing genetic mutations and understand why the defects result in vision loss. It also makes it tough to figure out why a disease can progress at such different rates, even for people within the same family. Perhaps what’s most difficult is identifying enough participants for clinical trials for potential therapies.
But anyone affected by a retinal disease can help scientists overcome these challenges by signing up with My Retina Tracker — the new retinal-disease patient registry funded, developed and curated by the Foundation Fighting Blindness.
During VISIONS 2014, consultant Rusty Bromley led an informative session on how the powerful and secure system enables patients to keep track of their clinical care and vision changes. At the same time, it enables scientists to search the “de-identified” (i.e., anonymous) patient information to study conditions and identify targets for treatments, preventions and cures.
“My Retina Tracker is like an electronic filing cabinet,” said Rusty. “We want it to be comprehensive to make it as useful as possible to patients, doctors and researchers.”
Those who sign up are asked to enter information about their diseases, including a genetic profile (if it’s known), a family history and vision function. A new clinician portal will be available in the next few months, enabling patients to invite their doctors to upload the results of their clinical exams. Those in the registry will receive an email when this new feature is available.
With human trials underway, and several more to be launched in the near future, clinical researchers can query My Retina Tracker to identify candidates for participation. To protect the identity of patients, the researchers are not given any names or personal information when they receive search results; they only receive alphanumeric IDs. My Retina Tracker administrators link the ID with the patient names and let patients know that they have matched the researcher’s participant criteria. It is then the patient’s choice as to whether he or she wishes to contact the researcher to express interest in clinical-trial participation.
“We worked very hard to protect the patient’s identity,” explained Rusty.
Who can register for My Retina Tracker? Anyone in the world, adults or minors (with parental permission), who has a retinal degenerative disease can. People who are genetically related to the patient, whether they are affected or not, can also sign up. Information about family members can be very helpful in genetic and natural history studies.
The system is free and accessible for people who are blind or have low vision. The Foundation has worked hard to make it compatible with screen readers such as JAWS. And we are continually enhancing and upgrading the interface to make it as user-friendly as possible.
My Retina Tracker is available now, so anyone interested can sign up whenever it is convenient. If you don’t have all the information you’d like to enter into the system at your fingertips, you can begin the process and return to complete registration at a later time. Because it is online, you can also update your information and keep personal notes about your disease progression and how it affects your life as often as you wish.
If you have any questions before or after you sign up, send an e-mail to email@example.com, and we’ll be happy to help you.
Pictured, above, is consultant Rusty Bromley.