Rare eye disease study maps patient journey and financial burden
NCT ID NCT03295071
Summary
This study aimed to better understand the progression of Leber Hereditary Optic Neuropathy (LHON), a rare genetic condition that causes sudden vision loss. Researchers collected past medical records and surveyed 44 patients to track how their vision changed over time and how the disease affected their daily life and finances. The goal was to gather information to help improve future care and understand the full impact of the disease on patients and their families.
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Contacts and locations
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Locations
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Alkek Eye Center
Houston, Texas, 77030, United States
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CHNO Les Quinze Vingts
Paris, 75012, France
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CHU d'Angers
Angers, 49100, France
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Doheny Eye Center UCLA Pasadena
Pasadena, California, 91105, United States
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Emory University Hospital
Atlanta, Georgia, 30322, United States
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Institut Catala de Retina
Barcelona, 08022, Spain
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Massachusetts Eye and Ear Infirmary
Boston, Massachusetts, 02114, United States
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Moorfields Eye Hospital
London, Greater London, EC1V 2PD, United Kingdom
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Ospedale Bellaria
Bologna, 40139, Italy
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Ospedale San Raffaele
Milan, 20132, Italy
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Wills Eye Institute
Philadelphia, Pennsylvania, 19107, United States
Conditions
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