Rate of Progression in USH2A-related Retinal Degeneration

To join this study, you need to be at least 8 years old. You must also have been diagnosed with an eye condition caused by specific changes in the USH2A gene, confirmed by a genetic test. It's important that you are able to attend all study visits over a four-year period and are willing to give your informed consent.

Your eyes must also meet certain health requirements. Both eyes should show signs of a 'rod-cone degeneration' (the type of vision loss in these conditions) and allow for clear photos to be taken. You should also be able to reliably participate in standard eye tests.

However, you would not be able to join if you have certain other genetic eye conditions, or if you are already planning to start a new experimental treatment during the study. You also can't participate if you've had certain eye surgeries recently, or have specific other serious eye problems like glaucoma or serious scarring in your eye. The research team will review all aspects of your health to make sure the study is a good fit for you.

If you take part in this study, you would visit the study clinic regularly over a four-year period. During these visits, you'll have various eye tests and checks to measure your vision and the health of your eyes. These tests might include looking at how well you see in different light, how wide your field of vision is, and how your retina (the light-sensitive part at the back of your eye) looks.

This study does not involve taking any new medications or treatments; it's purely observational. Essentially, you'll be monitored to see how your condition naturally progresses. There are also plans for an extension study that would involve two additional visits after the initial four years, at the seven-year and nine-year marks. The total duration of your involvement could be up to nine years if you participate in the extension.