Big Data Shines Light on Rare Diseases

For most people, being nearsighted is a nuisance, easily treated with a prescription for glasses or contact lenses. But some experience a complication that can cause permanent blindness.

It's called myopic choroidal neovascularization, and it affects about 41,000 people in the United States. It occurs when new, damaging blood vessels grow beneath the retina at the back of the eye. Patients experience a severe loss of vision in the central part of their sight. If not treated early, patients can suffer permanent vision loss.

Because it's a rare condition, there are few studies offering ophthalmologists guidance on how best to treat it. Which treatments do ophthalmologists offer? When do they treat? How well does treatment work? 

To find answers, researchers turned to the American Academy of Ophthalmology's eye disease clinical registry, the IRIS Registry (Intelligent Research in Sight). The IRIS Registry is the largest source of real-time data on ophthalmic care nationwide. It currently holds clinical information from 134 million office visits to more than 16,000 ophthalmologists and eye care professionals in the United States.

"Simply put, data drives good medicine. Physicians need the latest, most accurate information to deliver the best care to our patients," says David W. Parke II, MD, the executive vice president and CEO of the American Academy of Ophthalmology. "This can be a real challenge when you're dealing with a rare condition. That's why the IRIS Registry is becoming a powerful tool to help guide decisions by ophthalmologists and their patients."

The result is the largest study ever conducted on this devastating condition. Published online in Ophthalmology, the journal of the American Academy of Ophthalmology, the study shows that patients treated early with an anti-VEGF drug experienced significant improvement in their vision. Patients who received no treatment lost vision. Anti-VEGF drugs target a chemical in the body that causes abnormal blood vessels to grow under the retina. Blocking VEGF reduces blood vessel growth and slows their leakage, helps to slow vision loss, and in some cases improves vision.

This study also showed that the patients did not need more than three anti-VEGF injections over the course of a year to achieve significant improvement in their vision.

As important, this study has proven once again that the IRIS Registry is an effective tool to gain insight into real-world diagnostic, preventive, and treatment patterns of ophthalmic conditions in the United States.

Source: American Academy of Ophthalmology