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CARGO, Hôpitaux Universitaires de Strasbourg, France

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How to contact the center

Full member

HCP Center

The Reference Center for Rare Disorders in Ophthalmic Genetics (CARGO) was created in the National Rare Diseases Plan in November 2004. It welcomes children, adults, couples or families concerned or likely to be affected by an ophthalmological disease of genetic origin.
The objectives of the center are:

Provide the patient and his/her family with a coherent and comprehensive medical (ophthalmological and genetic in particular), orthoptic (rehabilitation, low vision), psychological and social care.
To ensure a relay with the attending physicians and correspondents, the medical and psycho-social networks of management of the low vision and the associations of patients.
Develop and participate in research programs dedicated to ophthalmological genetics at the local, national and international levels.

Contact

CARGO, Hôpitaux Universitaires de Strasbourg, France

Hôpital Civil -Bâtiment du Centre de Recherche en Biomédecine de Strasbourg (CRBS),1 Rue Eugène Boeckel
67000 STRASBOURG
France

Team

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
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Dr Jérôme De Sèze

France

Neuro-Ophthalmology Rare Diseases (WG2)
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Dr Monika Grudzinska Pechhacker

France

CPMS & Digital Medecine (TWG10), Genetic Diagnostics (TWG6), Pediatric Ophthalmology Rare Diseases (WG3), Retinal Rare Eye Diseases (WG1)
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Dr Dorothée Leroux

Substitute

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
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Dr Isabella Vacchi

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)
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Dr Amélie Gavard

France

Anterior Segment Rare Eye Diseases (WG4), BBS Guidelines, 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)
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Caroline Wernert-Iberg

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)
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Francesco Rotolo

France

CPMS & Digital Medecine (TWG10)
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Clinical trials

NCT03746522 - Completed

Setmelanotide (RM-493), Melanocortin-4 Receptor (MC4R) Agonist, in Bardet-BiedlSyndrome (BBS) and Alström Syndrome (AS) Patients With Moderate to Severe Obesity.

Interventional
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NCT01235624 - Completed

Autosomal Dominant Retinitis Pigmentosa: Prevalence of Known Genes Identification of New Loci/Genes.

Interventional
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NCT00213811 - Completed

Bardet-Biedl Syndrome Study: Clinical and Genetic Epidemiology Study in Adults.

Observational
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NCT02860520 - Recruiting, Active

Clinical implication of Retinitis Pigmentosa molecular diagnostic using high throughput sequencing (RP-SEQ-HD).

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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NCT02796274 - Completed

Historical Case Record Survey of Visual Acuity Data From Patients With Leber’s Hereditary Optic Neuropathy (LHON).

Interventional
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NCT03913143 - Active, Not recruiting

A double-masked, randomized, controlled, multiple-dose study to evaluate the efficacy, safety, tolerability and systemic exposure of QR-110 in Subjects with Leber’s Congenital Amaurosis (LCA) due to c.2991+1655A>G mutation (p.Cys998X) in the CEP290 gene (Illuminate).

Interventional
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NCT06070467 - Not recruiting

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

Observational
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