Mission
The mission of eyeGENE® is to facilitate research into the causes and mechanisms of rare inherited eye diseases and accelerate pathways to treatments.
About the research study
Kerry Goetz, Associate Director of the Office of Data Science and Health Informatics, within the National Eye Institute, is the Principal Investigator of this research study. This study is being conducted at the National Institutes of Health in Bethesda, Maryland. However, we expect that research participation will occur remotely for most people. No compensation will be provided for research participation. Please feel free to reach out to the research team with questions about participation via email, neieyegeneinfo@nei.nih.gov, or phone 301-435-3032.
What you would need to do
eyeGENE® is free to join, and participation will always be free. People who take part in the program will answer surveys on different topics. They may be asked to share their health records. They may give samples of saliva and/or blood for DNA tests. The health information that participants share with eyeGENE® will go into a secure database. Researchers all over the world can apply to use this data to study different inherited eye conditions and possibly other health conditions. This may lead to better treatments and ways to prevent disease.
Eligibility
eyeGENE® is currently open to recruitment for people in the United States or Canada who have the following eye conditions:
- Aniridia
- Best disease
- Blue-cone monochromacy
- Corneal dystrophy
- Other hypopigmentation disorder affecting vision (e.g., Oculocutaneous and ocular albinism, Hermansky-Pudlak syndrome, Chediak-Higashi syndrome)
eyeGENE® is also recruiting blood relatives of people with the above conditions.
Join Us
If you are interested in participating in eyeGENE®, complete the fields below and click Submit.
