Researchers track vision loss and life impact in rare eye disease

NCT ID NCT03295071

First seen Mar 03, 2026 · Last updated May 14, 2026 · Updated 7 times

Summary

This study looked at 44 people with a confirmed genetic diagnosis of Leber Hereditary Optic Neuropathy (LHON), a rare inherited eye disease that causes vision loss. Researchers reviewed medical records and asked participants about their vision, quality of life, and the financial costs of the disease. The goal was to better understand how LHON affects people over time, not to test a new treatment.

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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

  • Alkek Eye Center

    Houston, Texas, 77030, United States

  • CHNO Les Quinze Vingts

    Paris, 75012, France

  • CHU d'Angers

    Angers, 49100, France

  • Doheny Eye Center UCLA Pasadena

    Pasadena, California, 91105, United States

  • Emory University Hospital

    Atlanta, Georgia, 30322, United States

  • Institut Catala de Retina

    Barcelona, 08022, Spain

  • Massachusetts Eye and Ear Infirmary

    Boston, Massachusetts, 02114, United States

  • Moorfields Eye Hospital

    London, Greater London, EC1V 2PD, United Kingdom

  • Ospedale Bellaria

    Bologna, 40139, Italy

  • Ospedale San Raffaele

    Milan, 20132, Italy

  • Wills Eye Institute

    Philadelphia, Pennsylvania, 19107, United States

Conditions

Explore the condition pages connected to this study.