According to a story from Buffalo News, Brett Perla was graduating high school when he first starting to experience symptoms of a rare condition of the cornea called keratoconus. This was in 2007, and back then there was no approved medication to treat and cure the condition. Thankfully, the opportunity to participate in a clinical trial that was testing a new treatment for keratoconus came his way.
Keratoconus is an eye disorder that causes the cornea to start thinning and change shape. The exact cause of the condition is still not known, but it is believed to be connected to certain genes as well as hormonal and environmental (allergies, eye rubbing) factors. About seven percent of patients have a family history. Symptoms of keratoconus can include blurred vision, nearsightedness, double vision, light sensitivity, and astigmatism. Both eyes are usually affected. Generally, the condition stops progressing after several years. It can be successfully treated with contact lenses or glasses, but in severe cases specialized contacts may be required. If the cornea becomes scarred, then a cornea transplant is necessary to retain vision. To learn more about keratoconus, click here.
Getting Patients Onboard
The clinical trial was testing a type of eyedrop that was meant to treat the disease. For Brett, the treatment was able to work well for him. While he had to wear contact lenses for a while, now his vision is perfect and he does not have to use any visual aids. Brett is an analyst with a company called Praxis Communications, and part of the company’s role is to help recruit patients for clinical trials. His personal experience with clinical trials has helped him become more successful.
Relating to Rare Patients
Part of the process is utilizing data from patient sites and social media in to determine how patients themselves are talking about their experience. Instead of just going through a list of symptoms and signs, Brett and his team are able to understand how patients are feeling in their own words. This gives the team an edge when they are trying to encourage rare disease patients to get involved in clinical trials that could be potential game changers for their diseases and their lives.