What a Landmark Real-World Study Reveals About Thyroid Eye Disease

A new study, presented at this year's Association for Research in Vision and Ophthalmology (ARVO) Annual Meeting, analyzed data from more than 34,000 patients across the United States to offer an unprecedented view into how TED evolves in real-world clinical settings.¹

TED is a rare autoimmune condition in which the immune system attacks the muscle and fat tissue behind the eyes, leading to symptoms such as eye bulging, double vision, redness, swelling, and pain or pressure that can significantly impact vision and daily life.²

For decades, TED has been described as a biphasic disease, often illustrated by Rundle's curve, which depicts an initial active inflammatory phase that peaks before transitioning to a more stable, chronic phase where symptoms may subside and inflammation stabilizes.² Treatment approaches have traditionally focused on this early window, when disease activity is believed to peak.

Uncovering a More Comprehensive Picture of How TED Progresses

The new real-world data presented at ARVO reveal that TED does not follow a single, predictable trajectory; instead, disease activity often persists beyond the first year of disease onset, and progression can occur at multiple points over time.

In the large-scale study, patients were followed for up to eight years. During that time, nearly one in three patients experienced worsening of their disease after their initial diagnosis, with the risk increasing to almost 40% by year eight. Importantly, disease progression was also seen in patients who were initially diagnosed with mild TED, who represented the vast majority (92%) of the study population. The findings suggest that TED can continue to worsen long after the early stages of the disease, highlighting the importance of ongoing monitoring and timely care for all patients living with TED.

"Thyroid Eye Disease has often been viewed as a condition that stabilizes after an initial phase, with patients going on to receive medical or surgical treatment. However, these new findings suggest that up to one-third of patients may progress to more moderate or severe forms of the disease at any time during their disease course," said Madhura A. Tamhankar, MD, professor of ophthalmology at the Scheie Eye Institute at the University of Pennsylvania, and lead investigator of the research.

Advancing the Understanding and Management of TED Through Real-World Evidence (RWE)

As our understanding of TED evolves, so should our approach to managing it.

Large-scale datasets, like the linked American Academy of Ophthalmology IRIS® Registry (Intelligent Research in Sight) and Komodo Health Research Dataset, presented at ARVO, help researchers better understand when progression occurs, how it varies across patients, and where risks may emerge. This new focus toward RWE reflects a broader effort to study complex conditions like TED as they are experienced in everyday clinical practice, not just in controlled environments.

Amgen's Center for Observational Research (CfOR) plays an important role in advancing the use of real-world data (RWD) to support evidence generation across the drug development lifecycle. CfOR leverages fit-for-purpose RWD and advanced analytics to generate high-quality RWE that helps to accelerate clinical development, advance understanding of the burden of disease, and evaluate the benefit-risk profile of Amgen's medicines.

"Using the largest cohort of highly-curated RWD for U.S. patients diagnosed with Thyroid Eye Disease (TED), we have been able to enhance our understanding of the significant disease progression that patients experience and the treatment strategies that physicians use to manage TED in clinical practice," said Brian Bradbury, vice president and head of the Center for Observational Research at Amgen. "These insights can help us move beyond traditional assumptions about TED and support efforts to continually advance patient care."

In TED, these insights may help clinicians identify patients at risk of progression earlier and support a more proactive, individualized care approach.

Continuing Our Commitment

Amgen's work in TED reflects a broader commitment to advancing understanding in rare and underserved conditions. By combining RWE with scientific and clinical expertise, Amgen is helping to build a more complete understanding of complex conditions like TED.

Progress has also been driven by greater awareness and collaboration across healthcare providers and the rare disease patient community. Today, TED care is increasingly multidisciplinary, with coordination across endocrinology, ophthalmology, and other specialties. At the same time, TED community organizations are helping patients access education, support and connection where few resources previously existed.

While meaningful progress has been made, important questions remain about how to continue to advance care for patients living with TED. As this understanding advances, it reinforces the need for a more individualized, long-term approach, one that reflects the variability of TED and supports more tailored patient care over time.

Amgen remains committed to advancing research, fostering collaboration, and helping shape the future of care for people living with TED.

References:

1. Ramesh S, et al. Disease progression in thyroid eye disease: Findings from a large real-world study in the United States. Presented at: Association for Research in Vision and Ophthalmology meeting; May 3-7, 2026; Denver
2. Barrio-Barrio J, Sabater AL, Bonet-Farriol E, et al. Graves' Ophthalmopathy. VISA versus EUGOGO Classification. Assessment and Management. Journal of Ophthalmology. 2015; 24912