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Table 1 Completeness of data recorded in reported data sources

From: Real-world data in retinal diseases treated with anti-vascular endothelial growth factor (anti-VEGF) therapy – a systematic approach to identify and characterize data sources

Country

Data source name (type)

Baseline status

Outcomes

Clinical

Treatment

Anti-VEGF

Safety

Human

Economic

Australia

Fight Retinal Blindness (active disease registry)

+++

++

+++

+++

+++

Australian Heart Eye Study (prospective cohort study)

++

+

+

Blue Mountains Eye Study (prospective cohort study)

+++

 

+

+

Macular Disease Foundation (active disease registry)

+

+++

++

Melbourne Collaborative Cohort Study (prospective cohort study)

+++

+

+

Canada

Southwestern Ontario Database (passive disease registry)

+++

+++

+++

+++

+++

+++

+++

British Columbia Ministry of Health Databases (administrative/claims database)

++

++

+++

Quebec prescription and medical claims databases (administrative/claims database)

++

+

+++

++

China

Beijing Eye Study (population-based longitudinal study)

+++

+++

+++

Denmark

Four referral centres in Denmark (unnamed – electronic medical records)

++

+

+++

France

Creteil Intercommunal University Hospital Eye Clinic (prospective cohort study)

++

+++

++

+++

++

+++

Retina France (cross-sectional study)

+++

++

+++

+++

+++

ALIENOR (prospective cohort study)

+++

+

+++

+

+++

Germany

OCEAN (prospective cohort study)

++

+++

+++

+++

+++

++

CAPTAIN (retrospective cohort study)

+++

+++

+++

++

+++

Bonn Ophthalmology online network (active disease registry)

+

++

++

+++

+++

Gutenberg Health Study (prospective cohort study)

+++

+++

+

+

FAM study (prospective cohort study)

+++

++

+

Landschaftsverband Rheinland database (active disease registry)

++

+

Iceland

Age, Gene/Environment Susceptibility–Reykjavik Study (prospective cohort study)

+++

+

Japan

Japan Medical Data Centre (administrative/claims database)

++

++

+++

+++

Hatoyama Cohort Study (prospective cohort study)

+++

+

++

++

Hisayama study (prospective cohort study)

++

+

+

Multinational

AURA study

+++

+++

+++

+++

+++

+++

The EPICOHORT study

++

+++

+++

+++

+++

European Genetics Database

+++

+++

+++

+++

++

IRISS

+

++

+

+++

LUMINOUS study

++

+++

+++

+++

+++

+++

VigiBase

+++

++

++

+++

+++

Norway

Tromso Eye Study (population-based longitudinal study)

+++

+

+

Sweden

Swedish Macula Register (active disease registry)

+++

+++

+++

+++

+++

+++

+++

Swedish Lucentis Quality Registry (active disease registry)

++

+++

+++

+++

+++

+++

++

UK

British Ophthalmological Surveillance Unit (electronic medical records)

++

++

+++

+++

+++

+++

Medisoft (electronic medical records)

+++

+++

+++

+++

+++

+++

+++

Scotland intravitreal ranibizumab treatment register (unnamed – electronic medical records)

+++

+++

+++

+++

+++

+++

UK Age-Related Macular Degeneration Electronic Medical Record Users Group (retrospective cohort study)

++

+++

+++

+++

+++

+++

Unnamed tertiary referral clinic (active disease registry)

+++

+++

+++

+++

+++

Gloucestershire NHS ophthalmology department (electronic medical records)

++

+++

+++

+++

Medical Retina Clinic at King’s College London (electronic medical records)

+++

+++

+++

+++

++

Medical Retina Service, St Thomas’ Hospital (electronic medical records)

++

+++

++

+++

+++

Belfast Health and Social Care Trust database (unnamed - electronic medical records)

++

++

+++

+++

The National Ophthalmology Database (active disease registry)

++

+

Grampian University Hospitals (electronic medical records)

++

+

English National Hospital Episode Statistics (electronic medical records)

++

USA

Duke University Eye Center (active disease registry)

+++

+++

+++

+++

+++

+++

++

Bascom Palmer Eye Institute (active disease registry)

++

+++

+++

+++

+++

IMS Health (administrative/claims database)

++

+++

+++

+++

+++

Wilmer Eye Institute (electronic medical records)

++

+++

+++

+++

+++

Doheny Eye Institute (active disease registry)

+++

+++

+++

+++

VRMNY (electronic medical records)

+++

+++

+++

+++

Wills Eye Hospital (electronic medical records)

+++

+++

+++

+++

A2ASDOCT (prospective observational study)

+++

+++

+++

Shiley Eye Center (prospective observational study)

++

+++

+++

+++

++

++

BRFSS (questionnaire/survey)

+++

+

++

++

i3 InVision Data Mart (electronic medical records)

+++

++

+++

New England Eye Center (retrospective observational study)

++

+++

+++

SOF/IAMD (prospective observational study)

+++

+++

+

+

Beaver Dam Eye Study (prospective observational study)

+++

+++

+

LALES (prospective observational study)

+++

+

+++

Nurses’ Health Study (prospective observational study)

+++

++

+

CAREDS (prospective observational study)

+++

+

MESA

+++

+

NHANES

+++

+

  1. +++, ‘good’; ++. ‘moderate’; +, ‘poor’; −, ‘unknown’. A2ASDOCT, AREDS (Age-Related Eye Disease Study) 2 Ancillary Spectral Domain Optical Coherence Tomography Study; ALIENOR, Antioxydants, LIpides Essentiels, Nutrition et maladies OculaiRes; AURA, Study to Assess the Effectiveness of Existing Anti vascular Endothelial Growth Factor (Anti VEGF) in Patients With Wet Age-related Macular Degeneration; BRFSS, Behavioral Risk Factor Surveillance System; CAPTAIN, the comparison of applied ophthalmological tests for suspected age-related macular disease patients; CAREDS, Carotenoids in Age-Related Eye Disease Study; EPICOHORT, study to assess the safety profile, treatment patterns, and efficacy of ranibizumab in real-life clinical setting/routine clinical practice; FAM, Fundus Autofluorescence in Age-related Macular Degeneration Study; IMS Health, IMS Health Real-World Data Medical Claims database; IRISS, The ILUVIEN Registry Safety Study; LALES, Los Angeles Latino Eye Study; LUMINOUS, study to evaluate the long-term safety, efficacy, treatment patterns and health-related quality of life outcomes in patients treated with ranibizumab in routine practice; MESA, Multiethnic Study of Atherosclerosis; NHANES, US National Health and Nutrition Examination Survey; NHS, UK National Health Service; OCEAN, Observation of Treatment Patterns With Lucentis in Approved Indications; SOF/IAMD, Study of Osteoporotic Fractures/Incidence of AMD study; UK, United Kingdom; UK-AMD-EMR, UK Age-Related Macular Degeneration Electronic Medical Record Users Group; USA, United States of America; VEGF, vascular endothelial growth factor; VRMNY, Vitreous Retina Macula Consultants of New York