101. Update on Outcome Measure Development in Large-vessel Vasculitis: Report from OMERACT 2018
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Sibel Z. Aydin, Joanna C. Robson, Antoine G. Sreih, Catherine Hill, Fatma Alibaz-Oner, Sarah Mackie, Susan Beard, Ahmet Gul, Gülen Hatemi, Tanaz A. Kermani, Alfred Mahr, Alexa Meara, Nataliya Milman, Beverley Shea, Gunnar Tómasson, Peter Tugwell, Haner Direskeneli, Peter A. Merkel, Aydin, Sibel Z., Robson, Joanna C., Sreih, Antoine G., Hill, Catherine, Alibaz-Oner, Fatma, Mackie, Sarah, Beard, Susan, Gul, Ahmet, Hatemi, Gulen, Kermani, Tanaz A., Mahr, Alfred, Meara, Alexa, Milman, Nataliya, Shea, Beverley, Tomasson, Gunnar, Tugwell, Peter, Direskeneli, Haner, Merkel, Peter A., and İÜC, Cerrahpaşa Tıp Fakültesi, Dahili Tıp Bilimleri Bölümü
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medicine.medical_specialty ,Immunology ,Disease ,DISEASE-ACTIVITY ,Severity of Illness Index ,Outcome (game theory) ,Article ,03 medical and health sciences ,0302 clinical medicine ,Rheumatology ,QUALITY-OF-LIFE ,GIANT-CELL ARTERITIS ,Internal medicine ,Large vessel vasculitis ,Outcome Assessment, Health Care ,medicine ,Humans ,Immunology and Allergy ,VASCULITIS ,Patient Reported Outcome Measures ,030212 general & internal medicine ,030203 arthritis & rheumatology ,OUTCOMES ,business.industry ,OMERACT ,TAKAYASU ARTERITIS ,medicine.disease ,GIANT CELL ARTERITIS ,Focus group ,Clinical trial ,LARGE-VESSEL VASCULITIS ,Physical therapy ,HEALTH ,TAKAYASUS-ARTERITIS ,business ,Vasculitis ,ACTIVITY SCORE ,Qualitative research - Abstract
Outcome Measures in Rheumatology Conference (OMERACT) -- MAY 15-18, 2018 -- Terrigal, AUSTRALIA Gul, Ahmet/0000-0001-8219-3720; ALIBAZ-ONER, FATMA/0000-0002-6653-1758; Hill, Catherine/0000-0001-8289-4922; Mahr, Alfred/0000-0002-1564-9115 WOS:000484027700024 PubMed ID: 30877212 Objective. The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group seeks to develop validated outcome measures for use in trials for large-vessel vasculitis (LVV). Methods. An international Delphi exercise conducted among investigators identified items considered important to measure active disease. In parallel, qualitative research with patients was conducted, including interviews and focus groups. Results. Next steps prioritized by the group for LVV include (1) defining disease states (remission, flare, and patient-acceptable symptom state) and (2) selection of patient-reported outcome tools. Conclusion. The ultimate goal is to develop an OMERACT-endorsed core set of outcome measures for use in clinical trials of LVV. Outcome Measures Rheumatol US Vasculitis Clinical Research Consortium (VCRC); NCATSUnited States Department of Health & Human ServicesNational Institutes of Health (NIH) - USANIH National Center for Advancing Translational Sciences (NCATS) [U54 AR057319]; National Institute of Arthritis and Musculoskeletal and Skin DiseasesUnited States Department of Health & Human ServicesNational Institutes of Health (NIH) - USANIH National Institute of Arthritis & Musculoskeletal & Skin Diseases (NIAMS) [U54 AR057319]; National Center for Research ResourcesUnited States Department of Health & Human ServicesNational Institutes of Health (NIH) - USANIH National Center for Research Resources (NCRR) [U54 RR019497]; NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASESUnited States Department of Health & Human ServicesNational Institutes of Health (NIH) - USANIH National Institute of Arthritis & Musculoskeletal & Skin Diseases (NIAMS) [U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319, U54AR057319] Funding Source: NIH RePORTER This work was funded in part by the US Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network, an initiative of the Office of Rare Diseases Research, National Center for Advancing Translational Science (NCATS). The VCRC is funded through collaboration between NCATS, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497).
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- 2019