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XOLARIS

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Clinical Trial

NCT04926129 Completed
XOLARIS

Natural history of the progression of X-linked retinitis pigmentosa.

Observational

Disease

Disease type

Retinitis Pigmentosa

Orphan drug recognition

NA

Inclusion / Exclusion

Opening date

01/01/2018

Closing date

10/02/2022

Inclusion criteria :

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Exclusion criteria :

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Funding

industry

Members involved

Main investigators

Pr Isabelle MEUNIER

Representative

France

Retinal Rare Eye Diseases (WG1)
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Others investigators

Prof. Dr. med. Karl Ulrich Bartz-Schmidt

Substitute

Germany

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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
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Dr Susanne KOHL

Substitute

Germany

Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
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Dr Joni Turunen

Representative

Finland

Genetic Diagnostics (TWG6), Pediatric Ophthalmology Rare Diseases (WG3), Research (TWG8)
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Pr Frank Holz

Representative

Germany

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Dr Philipp Herrmann

Substitute

Germany

CPMS & Digital Medecine (TWG10), Genetic Diagnostics (TWG6), Research (TWG8), Retinal Rare Eye Diseases (WG1)
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Pr Carel HOYNG

Representative

Netherlands

Genetic Diagnostics (TWG6), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
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Dr Camiel BOON

Representative

Netherlands

Anterior Segment Rare Eye Diseases (WG4), Genetic Diagnostics (TWG6), National Integration (TWG9), Pediatric Ophthalmology Rare Diseases (WG3), Registries & Epidemiology (TWG7), Research (TWG8), Retinal Rare Eye Diseases (WG1)
Working Group Leader
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ERN EYE member investigating site

HCP : Principal investigators

Reference Center Rare Diseases ‘Genetic Sensory Diseases’, MAOLYA, Montpellier, France

Adress

Hôpital Gui de ChauliacService Ophtalmologie80, avenue Augustin Fliche 1er étage, bureau 1414

34 295 Montpellier Cedex 5

France

Centre for Ophthalmology, University Eye Hospital, Tübingen, Germany

Adress

Department für Augenheilkunde Tübingen Forschungsinstitut für Augenheilkunde Elfriede-Aulhorn-Str. 7

72076 Tübingen

Germany