Clinical Trial
Disease
Disease type
Leber Hereditary Optic Neuropathy (LHON)
Stargardt Disease
Orphan drug recognition
NA
Inclusion / Exclusion
Funding
industry
Members involved
Main investigators
Dr Catherine Vignal-Clermont
France
Neuro-Ophthalmology Rare Diseases (WG2)
Working Group Leader
Dr Christophe ORSSAUD
Substitute
France
Genetic Diagnostics (TWG6), Low Vision Daily Life and Patients Groups (TWG5), National Integration (TWG9), Neuro-Ophthalmology Rare Diseases (WG2), Registries & Epidemiology (TWG7), Research (TWG8)
Others investigators
Pr Isabelle Audo
Representative
France
Genetic Diagnostics (TWG6), Low Vision Daily Life and Patients Groups (TWG5), National Integration (TWG9), Neuro-Ophthalmology Rare Diseases (WG2), Pediatric Ophthalmology Rare Diseases (WG3), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Pr Carel HOYNG
Representative
Netherlands
Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Dr Giacomo Maria Bacci
Representative
Italy
Anterior Segment Rare Eye Diseases (WG4), Genetic Diagnostics (TWG6), Low Vision Daily Life and Patients Groups (TWG5), Pediatric Ophthalmology Rare Diseases (WG3), Retinal Rare Eye Diseases (WG1)
Dr Katarina Stingl
Representative
Germany
Low Vision Daily Life and Patients Groups (TWG5), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
Dr Susanne KOHL
Substitute
Germany
Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
Pr Michael LARSEN
Representative
Denmark
Neuro-Ophthalmology Rare Diseases (WG2), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
Pr Dominique BREMOND-GIGNAC
Representative
France
Anterior Segment Rare Eye Diseases (WG4), CPMS & Digital Medecine (TWG10), Genetic Diagnostics (TWG6), Low Vision Daily Life and Patients Groups (TWG5), National Integration (TWG9), Neuro-Ophthalmology Rare Diseases (WG2), Pediatric Ophthalmology Rare Diseases (WG3), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
ERN EYE member investigating site
HCP : Principal investigators
RÉFÉRET National Hospital of Ophthalmology of Quinze-Vingts, Paris, France
Adress
28 Rue de Charenton
75012 Paris
France
Radboud university medical center, Nijmegen, Netherlands
Adress
Geert Grooteplein Zuid 10
6525 GA Nijmegen
Netherlands
AOU Careggi – AOU Meyer Consortium, Firenze, Italy
Adress
Largo Brambilla 3
50134 Florence
Italy
Centre for Ophthalmology, University Eye Hospital, Tübingen, Germany
Adress
Department für Augenheilkunde Tübingen Forschungsinstitut für Augenheilkunde Elfriede-Aulhorn-Str. 7
72076 Tübingen
Germany
Rigshospitalet, Copenhagen, Denmark
Adress
Inge Lehmanns Vej 7 Entrance 2, 6. floor Section 2061
2100 Copenhagen
Denmark
OPHTARA – AP-HP, Hôpital Necker-Enfants Malades, Paris, France
Adress
Service d'ophtalmologieBât. Lecourbe - RC149 rue de Sèvres
75 015 Paris
France
University Hospital Graz, Department of Neuro-Ophthalmology, Graz, Austria
Adress
Auenbruggerplatz 4
8036 Graz
Austria
Medical University of Vienna, Dept of Ophthalmology, Vienna, Austria
Adress
Spitalgasse 23
1090 Vienna
Austria