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OPHTARA – AP-HP, Hôpital Necker-Enfants Malades, Paris, France

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How to contact the center

Full member

HCP Center

The Reference Center for Rare Diseases in Ophthalmology was recognized in 2006
as part of the Rare Diseases Plan 2006-2011, re-labeling in 2017. OPHTARA is
unique consortium part of ERN-EYE with 5 Paris University Hospital sites: Necker
(Coordinator site), Pitié Salpetrière, HEGP, Cochin and Hôtel Dieu (component sites).

Picture : Celette

Contact

OPHTARA – AP-HP, Hôpital Necker-Enfants Malades, Paris, France

Service d'ophtalmologieBât. Lecourbe - RC149 rue de Sèvres
75 015 Paris
France

Team

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
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Dr Alejandra Daruich-Matet

France

National Integration (TWG9), Pediatric Ophthalmology Rare Diseases (WG3), Registries & Epidemiology (TWG7), Retinal Rare Eye Diseases (WG1)
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Pr Matthieu Robert

France

Neuro-Ophthalmology Rare Diseases (WG2), Pediatric Ophthalmology Rare Diseases (WG3), Registries & Epidemiology (TWG7), Retinal Rare Eye Diseases (WG1)
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Nathalie De Vergnes

France

Genetic Diagnostics (TWG6)
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Clinical trials

NCT04125927 - Completed

Open-label, Single-arm, Multicenter Study to Assess the Safety of Cystadrops® in Pediatric Cystinosis Patients From 6 Months to Less Than 2 Years Old

Interventional
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NCT04561466 - Recruiting, Active

Study of the efficacy of Befizal® 200mg in the treatment of Leber’s hereditary optic neuropathy

Interventional
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NCT04153344 - Completed

Function of the Pigment Epithelium in Patients With Type 1 Neurofibromatosis (NEF-1)

Observational
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NCT03940690 - Suspended

Interest of Intravitreal Injections of Anti-VEGF as Initial and Adjuvant Treatment in Coats Disease.

Interventional
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2020-004594-43 - Completed

A phase II, open-label, efficacy study of daily administration of sodium valproate in patients clinically affected by Wolfram syndrome due to monogenic mutation.

Interventional
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NCT02771379 - Completed

A Non-interventional Study of Clinical Experience in Patients Prescribed Raxone® for the Treatment of Leber’s Hereditary Optic Neuropathy (LHON).

Observational
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NCT04276558 - Recruiting, Active

Efficacy, Safety and Pharmacokinetics of 3 Doses of REC 0/0559 Eye Drops for the Treatment of Stage 2 (Moderate) and 3 (Severe) Neurotrophic Keratitis in Adult Patients

Interventional
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NCT05408715 - Recruiting, Active

An International Prospective Natural History Study in Children With a Type II Collagen Disorder With Short Stature

Observational
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NCT00422721 - Completed

Genetic Study of Patients Suffering From Congenital Amaurosis of Leber or From an Early Severe Retinal Dystrophy.

Interventional
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NCT02970266 - Completed

Genetic Decryption of Leber Congenital Amaurosis (LCA) in a Large Cohort of Independent Families.

Observational
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