SeeMyLife

Clinical Trial

NCT06070467 Not recruiting

SeeMyLife

Holistic Mixed Approaches to Capture the Real Life of Children With Rare Eye Diseases

Observational

Disease

Disease type

Other

Patient type

Adult

Children

Inclusion / Exclusion

Inclusion criteria :

Exclusion criteria :

Funding

Public

Members involved

Main investigators

Pr Hélène Dollfus

Representative

France

Anterior Segment Rare Eye Diseases (WG4), CPMS & Digital Medecine (TWG10), Epag, ERN-EYE Coordinating committee, 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

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

Dr Philipp Herrmann

Substitute

Germany

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

Pr Frank Holz

Representative

Germany

Prof Reda ZEMAITIENE

Representative

Lithuania

Anterior Segment Rare Eye Diseases (WG4), National Integration (TWG9), Pediatric Ophthalmology Rare Diseases (WG3)

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)