Leber Hereditary Optic Neuropathy (LHON) Historical Case Record Survey
The objective of this survey is to establish the clinical course of vision loss and recovery in patients with a genetically confirmed diagnosis of Leber Hereditary Optic Neuropathy (LHON).
Visual acuity changes over time from onset of symptoms and from visual acuity nadir will be the main endpoint analysed.
The survey will collect historically documented visual acuity data for all patients at participating sites with a genetically confirmed diagnosis of LHON. No exclusion criteria apply. Patients are not required to attend the clinic for the survey.
Data will be collected in a completely anonymous manner. Ethical approvals and data release agreements will be obtained as required by local regulations.
Leber Hereditary Optic Neuropathy (LHON)
|Study Design:||Observational Model: Case-Only
Time Perspective: Retrospective
- Visual acuity [ Time Frame: average 0 to 10 years (retrospective) ] [ Designated as safety issue: No ]The Entire duration of the disease patient by patient basis up to the date of completion of the Case Report Form (CRF).
|Study Start Date:||August 2013|
|Estimated Primary Completion Date:||October 2013 (Final data collection date for primary outcome measure)|
|Patients with LHON|
|University Hospitals Leuven||Not yet recruiting|
|Leuven, Belgium, 3000|
|Contact: Werner Spillers, Prof Dr|
|Principal Investigator: Werner Spillers, Prof Dr|
|Centre de Recherche Institut de la Vision INSERMN U 968||Not yet recruiting|
|Paris, France, 75012|
|Contact: Jose-Alain Sahel, Prof|
|Principal Investigator: Jose-Alain Sahel, Prof|