Massive global study maps rare eye disease journey

NCT ID NCT05957276

Ongoing Knowledge-focused Sponsor: Janssen Research & Development, LLC Source: ClinicalTrials.gov ↗

Summary

This study is collecting information from people with inherited retinal diseases to better understand how these conditions progress over time. Researchers are gathering data on vision changes, genetic patterns, and how the disease affects daily life. The goal is to build knowledge that could help improve future patient care and management strategies.

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes NO responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

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Locations

ASST Santi Paolo e Carlo

Milan, 20142, Italy
Arcispedale S. Anna Ferrara

Ferrara, 44124, Italy
Azienda Ospedaliera Univ.- Università Degli studi della Campania - Luigi Vanvitelli

Naples, 80131, Italy
Azienda Ospedaliero Universitaria Careggi

Florence, 50134, Italy
Bascom Palmer Eye Institute

Miami, Florida, 33136, United States
Baylor College of Medicine

Houston, Texas, 77030, United States
Beijing Children's Hospital, Capital Medical University

Beijing, 100045, China
Beijing Tongren Hospital CMU

Beijing, 100730, China
CHU Montpellier

Montpellier, 34295, France
CHU Nantes

Nantes, F44093, France
Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts

Paris, 75012, France
Centre for Eye Research Australia

East Melbourne, 3002, Australia
Cleveland Clinic

Cleveland, Ohio, 44195, United States
Clinica Oftalmologica Sao Lucas

São Paulo, 01427-002, Brazil
Emory University

Atlanta, Georgia, 30322, United States
Eye and ENT Hospital of Fudan University 1

Shanghai, 200031, China
Ghent University Hospital

Ghent, 9000, Belgium
Helsingin Yliopistollinen Keskussairaala

Helsinki, 00100, Finland
Hopitaux universitaires de Strasbourg

Srasbourg, 67091, France
Hosp Univ Fund Jimenez Diaz

Madrid, 28040, Spain
Hosp. Sant Joan de Deu

Barcelona, 08950, Spain
Hosp. Univ. 12 de Octubre

Madrid, 28041, Spain
Hosp. Univ. Donostia

Donostia / San Sebastian, 20014, Spain
Hosp. Univ. de Bellvitge

Barcelona, 08907, Spain
Hosp. Virgen Macarena

Seville, 41009, Spain
Hull University Teaching Hospitals NHS Trust

Hull, HU32JZ, United Kingdom
Hôpital Necker-Enfants Malades

Paris, 75015, France
INRET Clínica e Centro de Pesquisa

Belo Horizonte, 30150-270, Brazil
IRCCS Fondazione G.B. Bietti per lo Studio e la Ricerca in Oftalmologia ONLUS

Roma, 00198, Italy
Instituto De Genetica Ocular

São Paulo, 04023-061, Brazil
John Hopkins Hospital

Baltimore, Maryland, 212051832, United States
Kepler Universitatsklinikum GmbH

Linz, 4021, Austria
Kyushu University Hospital

Fukuoka, 812-8582, Japan
Leeds Teaching Hospitals NHS Trust

Leeds, LS9 7TF, United Kingdom
Lions Eye Institute

Nedlands, 6009, Australia
Medizinische Universitaet Wien

Vienna, A-1090, Austria
Mie University Hospital

Tsu, 514 8507, Japan
Nagoya University Hospital

Nagoya, 466-8560, Japan
National Hospital Organization Tokyo Medical Center

Meguro-ku, 152 8902, Japan
Ochsner Medical Center

New Orleans, Louisiana, 70121, United States
On Oftalmologia LTDA

Pinheiros, 05406-900, Brazil
Oregon Health And Science University

Portland, Oregon, 97239, United States
Ospedale San Raffaele

Milan, 20132, Italy
Peking Union Medical College Hospital

Beijing, 100730, China
Policlinico Universitario Agostino Gemelli

Roma, 00168, Italy
Retina Consultants of Texas

Bellaire, Texas, 77401, United States
Rigshospitalet Glostrup

Glostrup Municipality, 2600, Denmark
Royal Liverpool University Hospital

Liverpool, L7 8XP, United Kingdom
Samsung Medical Center

Seoul, 06351, South Korea
Seoul National University Bundang Hospital

Gyeonggi-do, 13620, South Korea
Severance Hospital

Seoul, 03722, South Korea
Shanghai Aier Eye Hospital

Shanghai, 200336, China
Shanghai General Hospital

Shanghai, 200080, China
Sun YatSen University, Zhongshan Ophthalmic Center

Guangzhou, 510060, China
Sunderland Eye Infirmary

Sunderland, SR29HP, United Kingdom
Sunnybrook Health Sciences Center

Toronto, Ontario, M4N 3M5, Canada
Sydney Children's Hospital

Westmead, 2145, Australia
Tel Aviv Sourasky Medical Center

Tel Aviv, 6423906, Israel
The Chaim Sheba Medical Center

Ramat Gan, 52621, Israel
UCSF

San Francisco, California, 94143, United States
UPMC

Pittsburgh, Pennsylvania, 15213, United States
Univ of Michigan Medical Center

Ann Arbor, Michigan, 48105, United States
Universitatsklinikum Bonn

Bonn, 53127, Germany
Universite de Lausanne, Hopital ophtalmique Jules-Gonin

Lausanne, 1004, Switzerland
University Hospital Basel, Eye Clinic/Institute of Molecular and Clinical

Basel, 4031, Switzerland
University Hospital Southampton NHS Foundation Trust

Southampton, SO166YD, United Kingdom
University Hospital Wales

Cardiff, CF244LU, United Kingdom
University Of Minnesota Medical Center

Minneapolis, Minnesota, 55455, United States
University of Alabama Birmingham

Birmingham, Alabama, 35294, United States
University of Arkansas for Medical Sciences

Little Rock, Arkansas, 72205, United States
University of Iowa

Iowa City, Iowa, 52242, United States
University of Rochester Medical Center

Rochester, New York, 14642, United States
University of Southern California

Los Angeles, California, 90033, United States
University of Texas Houston

Houston, Texas, 77204, United States
Xin Hua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine

Shanghai, 200092, China

Conditions

Explore the condition pages connected to this study.

INHERITED RETINAL DISEASES