Previously there were very few opportunities to obtain systematically collected information from a very large sample size of patients with a rare, orphan disease, such as retinitis pigmentosa (RP). A relatively new, international, online registry has been developed for individuals affected by inherited retinal degenerative disease (IRD), known as My Retina Tracker®. This registry is intended to: improve understanding of the types and prevalence of IRDs; support and promote research in the IRDs; and facilitate clinical studies and trials.
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