REALITY LHON Registry, v1.0
Research type
Research Study
Full title
Observational Registry Study of Leber Hereditary Optic Neuropathy (LHON) Affected Patients
IRAS ID
229694
Contact name
Patrick Yu Wai Man
Contact email
Sponsor organisation
GenSight Biologics
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
This an observational study in both adults and children with condition called Leber Hereditary Optic Neuropathy.\nData will be taken retrospectively from patients medical records including visual examination data, medical history, family history, number, type, and reason for visiting medical specialists regarding their disease.\nData will be collected from the date of onset of vison loss and for a minimum of 2 visual function assessments between 1 and 3 years afterwards.\nA patient-reported survey will be administered to evaluate the impact of the disease on health related quality of life, and the direct and indirect costs associated with the disease. Subjects who agree to participate will be given a link that will be accessible online either at home or at the clinic.\n
REC name
London - Bloomsbury Research Ethics Committee
REC reference
17/LO/1883
Date of REC Opinion
17 Jan 2018
REC opinion
Further Information Favourable Opinion