Abstract Listings 2026

Purpose

Real-world evidence on thyroid eye disease (TED) using large-scale population-level data is limited. A global observational study is underway to characterize TED patient journeys. Here, we present findings on pre-diagnosis journeys among patients in the UK.

Methods

We used General Practice (GP) Clinical Practice Research Datalink (CPRD Aurum) and Hospital Episode Statistics (HES; inpatient, outpatient) data to identify newly diagnosed TED patients between 1 Jan 2010 and 31 Mar 2024. Demographics, healthcare consultations, thyroid dysfunction, and TED-related signs or symptoms were assessed 12-months pre-diagnosis (baseline). TED-related signs or symptoms were identified using diagnosis codes for diplopia, proptosis, ocular pain, strabismus, orbital inflammation, keratoconjunctivitis, visual disturbance, optic neuropathy, lid retraction, and other eye/adnexa disorders.

Results

4,115 patients with TED were identified: 76% female, 76% white, median (IQR) age 52 years (41, 64). Nearly all (n=4,080) had baseline healthcare consultations, including ophthalmology (58%) and endocrinology (51%). Overall, 58% (n=2,385) had ≥1 baseline thyroid-related diagnosis recorded, most commonly hyperthyroidism (87%). Only 15% (n=614) patients had ≥1 baseline TED-related signs or symptoms recorded; most frequent signs or symptoms were keratoconjunctivitis (36%), diplopia (31%), proptosis (16%), ocular pain (8%), and strabismus (7%).

Conclusion

In this large UK cohort, most patients had healthcare consultation in the year preceding their initial TED diagnosis, yet few had documented TED-related signs or symptoms in GP setting. Our findings suggest potential under-recognition or under-recording in routine clinical data, highlighting opportunities to improve clinician awareness and identification of TED.

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