EURETINA 2022 LIVE Coverage: Real-World Evidence Registries in Ophthalmology

The emergence of large digital databases of health records – which enables the collection and analysis of data – is revolutionizing how specialists diagnose and treat patients.

Real-world data (RWD) on treatment pathways, clinical outcomes, and characteristics of patients with retinal diseases are useful for conducting real-world studies in the field of ophthalmology. RWD comprises findings from various observational study types and can provide vital information about the effectiveness of a treatment in clinical practice. 

RWD sources consist of diverse cohorts of patients, including those that are normally excluded from randomized controlled trials (RCTs), and can therefore provide insight into the clinical effectiveness of a treatment in various subgroups of patients in a real-world setting. Evidence from RWD sources may provide a better understanding of the long-term safety, effectiveness in clinical practice and utilization patterns of anti-VEGF therapy.

Experts from around the world shared some of the current RWD available, containing information on patients with retinal diseases, on Day 2 of the 22nd EURETINA Congress (EURETINA 2022) in Hamburg, Germany.

Big Data and AMD

Big data can lead to new insights in age-related macular degeneration (AMD), according to Dr. Aaron Lee, a retina specialist at the University of Washington, USA. Big data is useful to store and analyze datasets that are otherwise too large and complex to be studied with traditional tools.

The Intelligent Research in Sight Registry (IRIS Registry) by the American Academy of Ophthalmologists (AAO) can be used to measure environmental risk factors for the disease. It can provide early risk prediction, differential diagnosis, and treatment optimization.

IRIS was started in 2014 and has over 70 million unique patients. It is the first comprehensive eye disease clinical registry in the United States and keeps records of patients, provider locations, age, gender, race, insurance, smoking, and phakic status.

Data from the Fight Retinal Blindness! Project used in a study showed that both aflibercept and ranibizumab improved visual acuity in routine clinical practice, with aflibercept showing greater improvements in this comparative analysis, said Dr. Daniel Barthelmes, director of the Eye Clinic at the Universitats Spital Zurich, Switzerland.

DR and Anti-VEGFs

The study looked at 12-month treatment outcomes of ranibizumab versus aflibercept for macular edema in central retinal vein occlusion in routine clinical practice. Its aim was to compare 12-month treatment outcomes of eyes receiving aflibercept or ranibizumab for macular edema secondary to central retinal vein occlusion (CRVO) in routine clinical practice.

The Swedish Macula Register (SMR) is a register for the treatment of AMD established in 2003. New modules for the treatment of diabetic macular edema (DME) and retinal vein occlusion (RVO) in the SMR were registered between 2019-2021, said Dr. Inger Westborg of Uppsala University Hospital, Sweden.

A total of 6,595 eyes in 4,506 patients are registered for diabetic retinopathy treatment. In 2021, there were 791 new treatment-naive eyes registered. There was a diagnosis of diabetic macular edema in 88% of patients. Men made up 60% of patients and women 40%. Treatment choice is anti-VEGF in most cases, noted Dr. Westborg. A total of 501 eyes in 4885 patients are registered for the retinal vein occlusion module. In 2021 there were 959 new treatment-naive eyes registered. Men comprised 53% of patients, and women 47%. Anti-VEGF was the first treatment choice in most cases.

As more countries start collecting data on patients and treatments, the future of big data and RWD looks bright, as the large quantum of data available may help doctors to diagnose and treat patients better in the future.

Editor’s Note: EURETINA 2022 is being held as a hybrid congress in Hamburg, Germany on 1-4 September 2022. Reporting for this story took place at the event. 

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