Large Vessel Vasculitis Working Group

About

Large-Vessel Vasculitis (LVV) is a rare set of diseases that mainly affect the aorta and its primary branches. The most common of the diseases are giant cell arteritis (GCA) and Takayasu arteritis (TA). Mainly because of the rarity of these diseases, there is no standardized protocol on how to monitor patients, when to repeat arterial imaging, or when to change therapy. This situation leads to significant variations in clinical practice. In the last 5 years, the Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group has been developing a core set of domains in LVV. The working group recognizes the need to obtain final endorsement of the domains prior to selecting and/or developing associated outcome measurement instruments.

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Current Stage in the OMERACT Process

The group is refining and validating a damage index for large vessel vasculitis. Future work will include patient engagement and prospective testing of the revised instrument.

Latest Update

OMERACT 2025 Conference Highlights
Lightning Talk: In a rapid-fire session, our team shared an upcoming teaser of the Special Interest Group (SIG) session taking place during the conference. 👉 Watch the lightning talk here
Looking Ahead: The group will move forward by selecting an endorsed Core Domain to begin Instrument Selection Part A. This marks an important transition from defining “what to measure” to the stage of deciding “how best to measure” disease impact in large vessel vasculitis.
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Meet the Team

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Haner Direskeneli, Turkey
Chair

sarah mackie

Sarah Mackie, UK
Chair

Peter Merkel

Peter Merkel, USA
Chair

kaitlin quinn

Kaitlin Quinn, USA
OMERACT Fellow

Sara Monti

Sara Monti, Italy
OMERACT Fellow

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Fahimeh Farjami, Türkiye

Patient Research Partner

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William Lichliter, Austria
Patient Research Partner

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Marleen Morrison, Canada
Patient Research Partner

New to OMERACT?

OMERACT Working Groups follow a structured, consensus-driven approach to developing Core Outcome Sets. Explore how this process unfolds and discover more about how OMERACT advances outcome measurement in rheumatology.
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