Research ArticleAccepted Article
Update on Outcome Measure Development in Large-Vessel Vasculitis: Report from OMERACT 2018
Sibel Z. Aydin, Joanna C. Robson, Antoine G. Sreih, Catherine Hill, Fatma Alibaz-Oner, Sarah Mackie, Susan Beard, Gülen Hatemi, Tanaz A. Kermani, Alfred Mahr, Alexa Meara, Nataliya Milman, Beverley Shea, Gunnar Tómasson, Peter Tugwell, Haner Direskeneli and Peter A. Merkel
The Journal of Rheumatology March 2019, jrheum.181072; DOI: https://doi.org/10.3899/jrheum.181072
Sibel Z. Aydin
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Joanna C. Robson
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Antoine G. Sreih
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Catherine Hill
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Fatma Alibaz-Oner
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Sarah Mackie
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Susan Beard
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Gülen Hatemi
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Tanaz A. Kermani
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Alfred Mahr
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Alexa Meara
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Nataliya Milman
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Beverley Shea
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Gunnar Tómasson
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Peter Tugwell
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Haner Direskeneli
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Peter A. Merkel
From the Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Division of Rheumatology, University of California at Los Angeles, Los Angeles, CA, USA; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, Fatih Sultan Mehmet Training and Research Hospital, Istanbul; Division of Rheumatology, Marmara University, School of Medicine, Marmara, Turkey; Department of Internal Medicine, University Paris Diderot, Paris, France; Department of Public Health Sciences, University of Iceland, Reykjavik, Iceland; Leeds Institute of Rheumatic and Musculoskeletal Medicine, Leeds, UK; Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust, Leeds; University Hospitals Bristol NHS Trust, Bristol, UK; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program and the Division of Rheumatology, Ottawa Hospital Research Institute, Ottawa, ON, Canada. This work was funded in part by the Vasculitis Clinical Research Consortium (VCRC). The VCRC is part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), 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 (NIAMS), U54 AR057319), and has received funding from the National Center for Research Resources (U54 RR019497). Address correspondence to Peter A. Merkel, MD, MPH Chief, Division of Rheumatology Professor of Medicine and Epidemiology University of Pennsylvania, Philadelphia, PA 19104. E-mail: pmerkel@upenn.edu
Abstract
Objective The 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 i) defining disease states (remission, flare, and patient-acceptable symptom state); and ii) selection of patientreported outcome tools.
Conclusion The ultimate goal is to develop an OMERACT-endorsed Core Set of outcome measures for use in clinical trials of LVV.
In this issue
The Journal of Rheumatology
Vol. 51, Issue 4
1 Apr 2024
Accepted manuscript
Update on Outcome Measure Development in Large-Vessel Vasculitis: Report from OMERACT 2018
Sibel Z. Aydin, Joanna C. Robson, Antoine G. Sreih, Catherine Hill, Fatma Alibaz-Oner, Sarah Mackie, Susan Beard, Gülen Hatemi, Tanaz A. Kermani, Alfred Mahr, Alexa Meara, Nataliya Milman, Beverley Shea, Gunnar Tómasson, Peter Tugwell, Haner Direskeneli, Peter A. Merkel
The Journal of Rheumatology Mar 2019, jrheum.181072; DOI: 10.3899/jrheum.181072
Accepted manuscript
Update on Outcome Measure Development in Large-Vessel Vasculitis: Report from OMERACT 2018
Sibel Z. Aydin, Joanna C. Robson, Antoine G. Sreih, Catherine Hill, Fatma Alibaz-Oner, Sarah Mackie, Susan Beard, Gülen Hatemi, Tanaz A. Kermani, Alfred Mahr, Alexa Meara, Nataliya Milman, Beverley Shea, Gunnar Tómasson, Peter Tugwell, Haner Direskeneli, Peter A. Merkel
The Journal of Rheumatology Mar 2019, jrheum.181072; DOI: 10.3899/jrheum.181072