This registry, called My Retina Tracker®, is for people with inherited retinal degenerative diseases (eye conditions passed down through families that affect the retina, the light-sensitive tissue at the back of the eye). It's sponsored by the Foundation Fighting Blindness. You can join if you have been diagnosed with an inherited retinal degenerative disease. The goal is to collect information from many participants over a long period (up to 20 years) to better understand these rare conditions and identify different types of diagnoses. This study is ongoing and aims to enroll 20,000 people.

Study design

This is an observational study, meaning researchers will collect information about your condition without giving you any specific treatments. It aims to enroll 20,000 participants.

What's involved

You will create an online profile to share your perspective on your eye disease, family history, genetic test results, and general health. You can also ask your doctor to add clinical measurements to your profile.

Compensation

Not stated in the trial record.

Follow-up

Data collection is ongoing, up to 20 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.