Global Patient Registry of Inherited Retinal Diseases

To take part in this study, you would need to have an inherited eye condition affecting your retina (an IRD). This means you might have signs or symptoms, or changes seen in your eye scans or tests, even if you don't have symptoms yet. You'd also need to have had a genetic test showing specific changes in your genes linked to conditions such as X-Linked Retinitis Pigmentosa (XLRP) or Achromatopsia (ACHM).

It's important that you or a legally acceptable representative can give your agreement to join the study after understanding what it involves. You should also be able to have standard eye tests and assessments. If you are already in, or being considered for, another trial testing a new treatment for your IRD, you won't be able to join this registry.

Caregivers can also take part if they are 18 or over and are identified as a primary caregiver by someone in the study (or their legal representative). They also need to agree to participate after understanding the study, and they shouldn't have an IRD themselves that causes vision problems.

This study focuses on collecting information over time rather than giving you new medications or treatments. What you do in the study will largely involve your usual visits to your eye doctor. Researchers will look at information from your medical records, including your past eye exams, scans, and genetic test results.

When you visit your eye doctor for your regular check-ups, some of the information from these appointments, like your visual acuity (how well you see) and retinal scans, would be shared with the study. There are no extra study visits, medications, or specific follow-up appointments beyond your standard care. The total duration of your participation would depend on how long you wish to remain in the registry.