Prospective International Registry for Treatment Exit Options in Uveitis (TOFU) – the First Five Years

Abstract

Uveitis diseases are generally rare and therefore often pose a significant challenge in treatment. In developed countries, non-infectious uveitis is one of the most common causes of severe functional impairment and even blindness. The current guidelines provide information on when and how to initiate treatment, but do not include recommendations on when and how to reduce or discontinue treatment. The Treatment Exit Options for Uveitis Register (TOFU) was initiated over five years ago, with the aim of improving the evidence for therapy reduction and termination. Over the past five years, the register has been established nationally with funding from the German Federal Ministry of Education and Research (BMBF), the Eye Foundation and industry partners and has since been expanded in individual European countries. The registry is under the auspices of the Uveitis Section of the German Ophthalmological Society (DOG). The analysis of baseline data from around 1000 patients shows that, in the prospectively documented patient population, intermediate uveitis is most common, followed by posterior uveitis, panuveitis and retinal vasculitis. The disease was bilateral in 75.9% of cases. The mean visual acuity was 0.22 ± 0.36 logMAR. Patients with panuveitis had the worst visual acuity, with 0.27 ± 0.39 logMAR. Severe visual impairment (> 1.0 logMAR) was observed in only 1% of patients at baseline. The continuation and European expansion will ensure the continuous generation of high-quality data in the coming years and thus help to develop recommendations on the end of therapy.

Keywords

uveitis - therapy - registry

Publication History

Received: 25 November 2024

Accepted: 26 January 2025

Accepted Manuscript online:
29 January 2025

Article published online:
02 June 2025

• Literatur

• 1 Jakob E, Reuland MS, Mackensen F. et al. Uveitis subtypes in a German interdisciplinary uveitis center–analysis of 1916 patients. J Rheumatol 2009; 36: 127-136
• 2 Barisani-Asenbauer T, Maca SM, Mejdoubi L. et al. Uveitis- a rare disease often associated with systemic diseases and infections- a systematic review of 2619 patients. Orphanet J Rare Dis 2012; 7: 57
• 3 Deutsche Ophthalmologische Gesellschaft und Berufsverband der Augenärzte Deutschlands e. V.. Virale anteriore Uveitis: S1-Leitlinie der Deutschen Ophthalmologischen Gesellschaft (DOG) und des Berufsverbands der Augenärzte Deutschlands (BVA). Version: 23 August 2022. Ophthalmologie 2023; 120 (Suppl. 1) 30-37
• 4 Thorne JE, Suhler E, Skup M. et al. Prevalence of noninfectious uveitis in the United States: A claims-based analysis. JAMA Ophthalmol 2016; 134: 1237-1245
• 5 Tomkins-Netzer O, Talat L, Bar A. et al. Long-term clinical outcome and causes of vision loss in patients with uveitis. Ophthalmology 2014; 121: 2387-2392
• 6 Li JQ, Welchowski T, Schmid M. et al. Prevalence and incidence of registered severe visual impairment and blindness due to uveitis in Germany. Ocul Immunol Inflamm 2024; 32: 735-739
• 7 Frick KD, Drye LT, Kempen JH. et al. Associations among visual acuity and vision- and health-related quality of life among patients in the multicenter uveitis steroid treatment trial. Invest Ophthalmol Vis Sci 2012; 53: 1169-1176
• 8 Jalil A, Yin K, Coyle L. et al. Vision-related quality of life and employment status in patients with uveitis of working age: A prospective study. Ocul Immunol Inflamm 2012; 20: 262-265
• 9 Tan P, Koh YT, Wong PY. et al. Evaluation of the impact of uveitis on visual-related quality of life. Ocul Immunol Inflamm 2012; 20: 453-459
• 10 Jabs DA, Nussenblatt RB, Rosenbaum JT. et al. Standardization of uveitis nomenclature for reporting clinical data. Results of the first international workshop. Am J Ophthalmol 2005; 140: 509-516
• 11 Dick AD, Rosenbaum JT, Al-Dhibi HA. et al. Guidance on noncorticosteroid systemic immunomodulatory therapy in noninfectious uveitis: Fundamentals of care for uveitis (focus) initiative. Ophthalmology 2018; 125: 757-773
• 12 Deutsche Ophthalmologische Gesellschaft und Berufsverband der Augenärzte Deutschlands e. V.. Leitlinie Nr. 24b der DOG und BVA: Nichtinfektiöse Uveitis posterior. Ophthalmologe 2017; 114: 1122-1134
• 13 Berufsverband der Augenärzte Deutschlands e.V. (BVA) und Deutsche Ophthalmologische Gesellschaft (DOG). Leitlinie Nr. 24a Uveitis intermedia. Ophthalmologe 2021; 118 (S1): 16-30
• 14 Deutsche Ophthalmologische Gesellschaft und Berufsverband der Augenärzte Deutschlands e. V.. Nicht-infektiöse anteriore Uveitis: S1-Leitlinie der Deutschen Ophthalmologischen Gesellschaft (DOG) und des Berufsverbands der Augenärzte Deutschlands (BVA). Version: 13.12.2023. Ophthalmologie 2025; 122 (Suppl. 1) 1-12
• 15 Jabs DA. Immunosuppression for the uveitides. Ophthalmology 2018; 125: 193-202
• 16 Al-Janabi A, El Nokrashy A, Sharief L. et al. Long-term outcomes of treatment with biological agents in eyes with refractory, active, noninfectious intermediate uveitis, posterior uveitis, or panuveitis. Ophthalmology 2020; 127: 410-416
• 17 Abásolo L, Rosales Z, Díaz-Valle D. et al. Immunosuppressive drug discontinuation in noninfectious uveitis from real-life clinical practice: A survival analysis. Am J Ophthalmol 2016; 169: 1-8
• 18 Smith JR, Thorne JE, Flaxel CJ. et al. Treatment of noninfectious uveitic macular edema with periocular and intraocular corticosteroid therapies: A report by the American Academy of Ophthalmology. Ophthalmology 2024; 131: 1107-1120
• 19 Saboo US, Metzinger JL, Radwan A. et al. Risk factors associated with the relapse of uveitis in patients with juvenile idiopathic arthritis: A preliminary report. J AAPOS 2013; (17) 460-464
• 20 Kalinina Ayuso V, van de Winkel EL, Rothova A. et al. Relapse rate of uveitis post-methotrexate treatment in juvenile idiopathic arthritis. Am J Ophthalmol 2011; 151: 217-222
• 21 Pichi F, Smith SD, Goldstein DA. et al. The humira in ocular inflammations taper (hot) study. Am J Ophthalmol 2024; 258: 87-98
• 22 You C, Lasave AF, Kubaisi B. et al. Long-term outcomes of systemic corticosteroid-sparing immunomodulatory therapy for birdshot retinochoroidopathy. Ocul Immunol Inflamm 2020; 28: 966-974