About this tracker

This site is built by a family living with retinitis pigmentosa, for others in the same spot. Every week it checks the public trial registries and research databases and shows what changed, so you don't have to dig through them yourself.

Where the data comes from

ClinicalTrials.gov, the US registry. Nearly every company-sponsored RP trial worldwide registers here, including trials run only in Europe, Asia or Australia. We track these conditions: retinitis pigmentosa, Usher syndrome, rod-cone dystrophy, Leber congenital amaurosis, inherited retinal degeneration, inherited retinal dystrophy, X-linked retinitis pigmentosa, Bardet-Biedl syndrome.

PubMed, the US National Library of Medicine's index of peer-reviewed research.

What it misses

Some academic trials register only in national registries (China's ChiCTR, the EU's CTIS, ISRCTN in the UK, ANZCTR in Australia and New Zealand) and won't appear here. Company press releases and conference presentations often come months before anything shows up in a registry or journal.

Labels like "Gene therapy" and the gene names are assigned automatically from the trial text, so they are occasionally wrong. The trial page on ClinicalTrials.gov is always the official record.

How to read a trial

Phase 1 tests safety in a small group. Phase 2 looks for signs it works. Phase 3 is a larger study that, if positive, supports an application for approval. Most treatments that start Phase 1 never reach approval.

Not medical advice

Nothing here is a recommendation. Talk to your retina specialist or genetic counselor before joining a trial or changing treatment.