CHICAGO—May is IRD Genetic Testing Awareness Month and Prevent Blindness, a nonprofit eye health and safety organization, has created new educational materials on Stargardt disease, a form of inherited retinal disease (IRD). The effort is supported by funding from Alkeus Pharmaceuticals, Inc. Prevent Blindness now offers a dedicated webpage, fact sheets, social media graphics, and a new Focus on Eye Health Expert Series episode titled, “Stargardt Disease,”  featuring Elias Traboulsi, MD, MEd, pediatric ophthalmologist and geneticist with the department of ophthalmology at the Cleveland Clinic.

Alkeus Pharmaceuticals is also offering free online resources, designed for people living with Stargardt disease, their families, and care partners, to provide educational information and support through “Your North Starg.” 

Stargardt disease, also known as Stargardt macular degeneration, Stargardt macular dystrophy or juvenile macular dystrophy, affects central vision due to a buildup of fatty material in the macula and is most commonly caused by a variant in the ABCA4 gene, according to the announcement. According to the Cleveland Clinic, there are an estimated 30,000 to 200,000 people with Stargardt disease in the United States.

“Although there is no known cure for Stargardt disease today, there is promising new research being conducted through clinical trials,” said Jeff Todd, president and CEO of Prevent Blindness.

According to Prevent Blindness, the most common symptom of Stargardt disease is a slow loss of central vision in both eyes. Other symptoms may include:

● Dark, gray, black, or hazy spots in the center of your vision.
● Sensitivity to light.
● Blurry vision that cannot be corrected with glasses.
● Difficulty seeing small details.
● Needing more time for your eyes to adjust between light and dark places.
● Difficulty seeing in the dark or low light.
● Color blindness.
● Lack of depth perception.
● Lack of contrast.

Genetic testing is important for IRD diagnosis, including Stargardt disease, Prevent Blindness told VMAIL. Testing may help to identify potential treatment options and create clinical trial opportunities for patients, as well as inform them about the potential risk of disease to other family members.

“We encourage patients to speak with their eye doctors about their risk for Stargardt disease and other IRDs, as well as how to complete genetic testing to determine the best treatment path to preserve their vision,” Todd said.

To learn more about IRDs and the benefits of genetic testing, visit Foundation Fighting Blindness. For more information on Stargardt disease, click here.

For additional information on inherited retinal diseases and genetic testing for vision issues, click here and for information on clinical trials specifically for eye disease and vision, click here.