Editorial: Thyroid eye disease

study of this disease is significantly hampered by lack of consensus on terminology and basic guidelines for management. The disorder con'nues to be described with several overlapping names-Graves ophthalmopathy, Graves orbitopathy, endocrine ophthalmopathy, thyroidassociated orbitopathy and ophthalmopathy-reflec'ng the absence of a unified conceptual framework. Furthermore, terms such as "new onset" or "acute" might mean "within 6 months" or "within 12 months." The term "chronic" might mean "stable, long-standing," but there are no clear defini'ons of what stability or "long-standing" actually mean. The terminologic confusion is exemplified by the commonly used term "moderate-to-severe," which just lumps together anything that is not "mild" or "vision-threatening."The lack of standardiza'on also affects the clinical scoring systems used to assess TED. The NOSPECS classifica'on emphasizes structural changes 1, whereas the Clinical Ac'vity Score (CAS) focuses on inflammatory signs 2, and the VISA system evaluates visual func'on, inflamma'on, strabismus, and appearance 3. Even fundamental terminology such as ac#vity is inconsistently defined across these frameworks and demonstrates substan'al inter-and intra-observer variability. Par'cularly, the assessment of disease ac'vity using CAS provides only a snapshot of a pa'ent's condi'on at a single visit, and has limited value for evalua'ng the broader clinical manifesta'ons and progression of TED, reflec'ng its design origins in an era when cor'costeroid therapy was the predominant treatment.In addi'on, the orbit is a closed compartment prone to "compartment syndrome," e.g. from obstruc'on of venous ouqlow, leading to conges'on. Orbital conges'on can be seen with vascular anomalies, orbital inflamma'on, orbital infec'on, and any other acute or sub-acute process that interferes with venous ouqlow. This can result in conjunc'val chemosis and injec'on, orbital pressure and pain, caruncular edema, eyelid edema and erythema, and even dysmo'lity -all the same signs that currently comprise the CAS. Hence, CAS is not specific to inflamma'on and its items could be related to orbital conges'on rather than true inflammatory ac'vity. This mismatch can lead to conceptual misunderstanding and introduce bias in clinical trials, further complica'ng the interpreta'on of therapeu'c outcomes.In order for the field to progress, we need a clear understanding of terminology and a standardiza'on across the globe that considers ethnic varia'ons. Efforts by local Socie'es and regional organiza'ons to establish TED guidelines osen lead to further confusion, par'cularly since guideline development is osen dominated by endocrinologists, with ophthalmologists underrepresented despite being the specialists most familiar with orbital anatomy, ocular mo'lity, visual func'on, and surgical rehabilita'on. The 2022 ATA/ETA consensus, for instance, included only two ophthalmologists among its nine authors 4, raising concerns about whether the nuanced clinical reali'es of TED were fully captured. Likewise, the European Group on Graves Orbitopathy (EUGOGO), an organiza'on affiliated with the European Thyroid Associa'on, has a membership structure that is theore'cally balanced by requiring centers to have a combined clinic staffed by both an endocrinologist and an ophthalmologist. However, the number of oculoplas'c specialists within this group remains limited, resul'ng in predominance of endocrinologists. Moreover, the EUGOGO thresholds for disease severity 5 do not fully reflect pa'ent experience, par'cularly given the variability in func'onal and psychosocial impact. As a consequence of this longstanding ambiguity, several clinically important aspects of TED, such as ocular surface dysfunc'on and phenotypic variability, have been insufficiently represented or en'rely omiued from many clinical trials. This lack of inclusion has contributed to variability in study methodology and, ul'mately, to inconsistent or difficult-to-interpret outcomes.Another example of the predominance of an endocrinology-oriented perspec've in the TED literature is the limited cita'on of studies conducted by the Interna'onal Thyroid Eye Disease Society (ITEDS), an interna'onal group composed primarily of ophthalmologists. Several ITEDS studies have generated essen'al data, including validated descrip'ons of inflammatory signs in TED and detailed analyses of intra-observer variability in proptosis measurement 678. Despite their methodological accurancy and mul'center design, these contribu'ons have been only sparsely acknowledged in studies led by endocrinologists.Collabora'on with endocrinologists remains essen'al, but leadership in defining ocular disease must rest with those trained specifically in ophthalmology and oculoplas'c surgery. Even with the best of inten'ons, placing primary responsibility for an eye-specific disorder in the hands of specialists without formal ophthalmic training can create gaps in perspec've. Endocrinologists contribute essen'al exper'se to the care of pa'ents with TED, but their focus and training differ naturally from those of ophthalmologists. Collabora've efforts remain vital, yet clinical guidance is strongest when shaped by those whose exper'se is most closely aligned with the structures and func'ons directly involved. Ensuring that ophthalmologists take a central role in defining terminology, diagnos'c criteria, and management strategies allows recommenda'ons to more accurately reflect the complexi'es of orbital disease and the visual system. This does not diminish the valuable contribu'ons of other disciplines; rather, it ensures that mul'disciplinary care is anchored in the exper'se best posi'oned to lead it, ul'mately improving consistency, safety, and outcomes for pa'ents worldwide.The cri'que of the guidelines currently in use further underscores the need for ophthalmologydriven standardiza'on.. It emphasizes the importance of foregrounding the quality-of-life impact of TED and calls for a clearer ra'onale behind the proposed shis from "inac've" to "stable" disease.Because clinicians have long relied on an ac've/inac've dis'nc'on, transi'oning toward a framework emphasizing "progressive" versus "stable" disease demands explana'on. Under this approach, the term "ac'vity" would be reserved exclusively for progressive features, preven'ng confusion when determining treatment thresholds. Addi'onal work will be required to develop guidelines for differen'a'ng inflammatory versus conges've disease, since these en''es require different treatment modali'es.It is well past 'me for ophthalmologists to retake the lead on TED, based on our unique exper'se.We now stand in a period of unprecedented therapeu'c evolu'on for TED, with emerging and increasingly effec've medical treatments reshaping clinical expecta'ons and standards of care 910111213. Only an interna'onal ophthalmology-led group with exper'se in orbital disease can provide proper clarity and consistency to the study and treatment of TED -a debilita'ng ophthalmic disorder. Such a group should be eager to collaborate with all stake holders, including endocrinologists, endocrine surgeons, radia'on oncologists, nuclear medicine specialists and basic and clinical scien'sts, to achieve the best possible outcomes for pa'ents worldwide. But decisions on the medical care of the eye, and formula'on of the appropriate ophthalmic terminology, should be driven by ophthalmologists.