REALITY LHON Registry

Completed

Conditions studied: Leber Hereditary Optic Neuropathy

In brief

This study is a multi-country retrospective and cross-sectional observational study of affected LHON subjects, based on retrospective subjects' medical chart abstractions and cross-sectional administration of patient-reported outcomes (PROs).

Key facts

Study ID: NCT03295071
Run by: GenSight Biologics
People needed: 44
Starts: 2018-01-03
Expected to finish: 2020-07-01
Last updated by the study team: 2026-03-02

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

Subjects who have a confirmed and genotyped diagnosis of LHON;
Subjects with visual function outcomes data including at least 2 visual function assessments between 1 year and 3 years (+/- 4 weeks) after vision loss;
Subjects who are willing and able to provide written informed consent if required as per local regulations;
For LHON subjects under the age of 18 years, permission from a legal guardian to participate in the study;

You may not qualify if…

Subjects who received any investigational drug, or participated in any LHON-related interventional clinical trial during the observational period;
Subjects without medical charts data available.

Where it is running

Doheny Eye Center UCLA Pasadena — Pasadena, California, United States
Emory University Hospital — Atlanta, Georgia, United States
Massachusetts Eye and Ear Infirmary — Boston, Massachusetts, United States
Wills Eye Institute — Philadelphia, Pennsylvania, United States
Alkek Eye Center — Houston, Texas, United States
CHU d'Angers — Angers, France
CHNO Les Quinze Vingts — Paris, France
Ospedale Bellaria — Bologna, Italy
Ospedale San Raffaele — Milan, Italy
Institut Catala de Retina — Barcelona, Spain
Moorfields Eye Hospital — London, Greater London, United Kingdom

Full record on ClinicalTrials.gov

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