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Rate of Progression in EYS Related Retinal Degeneration (Pro-EYS)

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Clinical Trial

NCT04127006 Active, Not recruiting
Rate of Progression in EYS Related Retinal Degeneration (Pro-EYS)

Rate of Progression in EYS Related Retinal Degeneration (Pro-EYS).

Observational

Disease

Disease type

Retinitis Pigmentosa

Orphan drug recognition

No

Patient type

Adult

Children

Inclusion / Exclusion

Opening date

25/02/2020

Closing date

31/12/2025

Inclusion criteria :

More

Exclusion criteria :

More

Funding

public

Members involved

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)
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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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Pr Carel HOYNG

Representative

Netherlands

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

Representative

Poland

National Integration (TWG9), Neuro-Ophthalmology Rare Diseases (WG2), Pediatric Ophthalmology Rare Diseases (WG3), Research (TWG8), Retinal Rare Eye Diseases (WG1)
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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
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Dr Joni Turunen

Representative

Finland

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