Clinical Trial
Disease
Disease type
Hereditary retinal disease
Paediatric clinical trials
Retinitis Pigmentosa
Usher Syndrome
Orphan drug recognition
No
Patient type
Adult
Children
Inclusion / Exclusion
Funding
patient organisation
Members involved
Main investigators
Pr 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
Others investigators
Pr Bart LEROY
Representative
Belgium
Genetic Diagnostics (TWG6), Low Vision Daily Life and Patients Groups (TWG5), National Integration (TWG9), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
Pr Elfride DE BAERE
Substitute
Belgium
Genetic Diagnostics (TWG6), Retinal Rare Eye Diseases (WG1)
Working Group Leader
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)
Dr Susanne KOHL
Substitute
Germany
Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
Pr Carel HOYNG
Representative
Netherlands
Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
ERN EYE member investigating site
HCP : Principal investigators
Centre for Ophthalmology, University Eye Hospital, Tübingen, Germany
Adress
Department für Augenheilkunde Tübingen Forschungsinstitut für Augenheilkunde Elfriede-Aulhorn-Str. 7
72076 Tübingen
Germany
RÉFÉRET National Hospital of Ophthalmology of Quinze-Vingts, Paris, France
Adress
28 Rue de Charenton
75012 Paris
France
Ghent University Hospital, Ghent, Belgium
Adress
Corneel Heymanslaan 10
9000 Ghent
Belgium
HCP : Others investigators
Radboud university medical center, Nijmegen, Netherlands
Adress
Geert Grooteplein Zuid 10
6525 GA Nijmegen
Netherlands