Research
Vision research and clinical trials
Researchers are studying many causes of vision loss. Here is how to follow the work and what to ask before you take part.
This page shares general information. It is not medical advice and Open Eyes does not run research or recommend any study or treatment. Talk with your own eye doctor before you decide anything.
What a clinical trial is
A clinical trial is a research study with volunteers that tests whether a treatment, device or approach is safe and whether it works. Each trial has rules about who can join, such as a specific diagnosis or a specific gene. Some trials are tested in stages, starting with small groups to check safety. Joining a trial is voluntary, and you can ask questions first.
Where to look
- ClinicalTrials.gov. The U.S. government's registry of studies. You can search by condition and location, and each listing says who can join and who runs it.
- National Eye Institute. Plain-language information on eye conditions and the research behind them.
- Foundation Fighting Blindness. A nonprofit that funds research on inherited retinal diseases and shares news and resources. We list it as a source; we are not connected to it.
- Your eye doctor. Ask whether a study might fit your diagnosis, and whether your doctor can talk with the research team.
Genetic testing and counseling
Some conditions, such as retinitis pigmentosa and Stargardt disease, are inherited. Genetic testing can sometimes identify the gene involved, and some studies are open only to people with a particular gene. A genetic counselor can explain what a result does and does not tell you, and what it could mean for family members. Ask your eye doctor for a referral.
Questions to ask before you join
- What is being tested, and why?
- What will I be asked to do, how often and for how long?
- What are the possible risks and benefits?
- Who pays for what, including travel?
- Can I leave at any time?
Be careful with unproven treatments
Progress is real. At least one gene therapy has been approved by the U.S. Food and Drug Administration for a specific inherited retinal condition. But some clinics sell treatments that are not proven and can cost a great deal or cause harm. Be cautious if someone promises a cure, charges to take part in a "trial," or tells you to stop seeing your own doctor. Check any study on ClinicalTrials.gov and ask your eye doctor.