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Scientists track vision loss in rare genetic eye disease to pave way for future treatments

NCT ID NCT05573984

First seen Apr 17, 2026 · Last updated Jun 23, 2026 · Updated 8 times

Summary

This study follows 50 people with a rare inherited eye condition called PRPF31-related retinal dystrophy (RP11) to see how their vision changes over time. Researchers will measure things like visual acuity, retinal thickness, and quality of life using eye exams and questionnaires. The goal is to better understand the disease's natural course and identify the best ways to measure improvement in future treatment trials.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Locations

  • Centre For Eye Research Australia (CERA) - Retinal Gene Therapy Unit

    East Melbourne, Australia

  • Lions Eye Institute

    Nedlands, Western Australia, 6009, Australia

  • Oregon Health and Science University - Casey Eye Institute

    Portland, Oregon, 97239, United States

  • Retina Foundation of the Southwest

    Dallas, Texas, 75321, United States

  • University of California San Francisco

    San Francisco, California, 94143, United States

  • University of Florida Health

    Jacksonville, Florida, 32209, United States

  • University of Michigan Kellogg Eye Center

    Ann Arbor, Michigan, 48105, United States

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this study could identify key measures of disease progression, helping design future clinical trials for treatments targeting this form of retinal dystrophy.

What could go wrong

This is an observational study, not testing any treatment. It may not lead directly to a therapy, and results may not apply to all forms of retinitis pigmentosa.

Conditions

The condition(s) this trial relates to.

Eye Diseases, Hereditary inherited retinal dystrophy retinitis pigmentosa retinitis pigmentosa 11

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.