Sibel Z Aydin1,2, Joanna C Robson1,2, Antoine G Sreih1,2, Catherine Hill1,2, Fatma Alibaz-Oner1,2, Sarah Mackie1,2, Susan Beard1,2, Ahmet Gul1,2, Gülen Hatemi1,2, Tanaz A Kermani1,2, Alfred Mahr1,2, Alexa Meara1,2, Nataliya Milman1,2, Beverley Shea1,2, Gunnar Tómasson1,2, Peter Tugwell1,2, Haner Direskeneli1,2, Peter A Merkel3,4. 1. From the Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Department of Clinical Epidemiology, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; University of the West of England; University of Bristol; University Hospitals Bristol National Health Service (NHS) Trust, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine; Leeds Teaching Hospitals NHS Trust, Leeds, UK; Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania; Division of Rheumatology, University of California at Los Angeles, Los Angeles, California; Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA; Discipline of Medicine, University of Adelaide; The Queen Elizabeth Hospital, Adelaide, Australia; Fatih Sultan Mehmet Training and Research Hospital; Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, 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. 2. S.Z. Aydin, Associate Professor in Rheumatology, Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; J.C. Robson, MRCP, PhD, Consultant Senior Lecturer, University of the West of England, and Honorary Senior Lecturer, University of Bristol, and Honorary Consultant in Rheumatology, University Hospitals Bristol NHS Trust; A.G. Sreih, MD, Assistant Professor of Medicine, Division of Rheumatology, University of Pennsylvania; C. Hill, MD, Professor, Discipline of Medicine, University of Adelaide, and Consultant Rheumatologist, The Queen Elizabeth Hospital; F. Alibaz-Oner, MD, Associate Professor of Rheumatology, Fatih Sultan Mehmet Training and Research Hospital; S. Mackie, MRCP, PhD, Associate Professor, Leeds Institute of Rheumatic and Musculoskeletal Medicine, and Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust; S. Beard, Bmus, Adelaide, Australia; A. Gul, MD, Professor of Rheumatology, Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; G. Hatemi, MD, Professor of Medicine, Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine; T.A. Kermani, MD, MS, Associate Professor of Medicine, Division of Rheumatology, University of California at Los Angeles; A. Mahr, MD, PhD, Professor of Internal Medicine, Department of Internal Medicine, University Paris Diderot; A. Meara, MD, Assistant Professor, Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center; N. Milman, MD, Assistant Professor, Division of Rheumatology, University of Ottawa, and Division of Rheumatology, The Ottawa Hospital, and Department of Clinical Epidemiology, Ottawa Hospital Research Institute; B. Shea, PhD, Clinical Investigator and Adjunct Professor, Ottawa Hospital Research Institute, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; G. Tómasson, MD, PhD, Assistant Professor of Medicine, Department of Public Health Sciences, University of Iceland; P. Tugwell, MD, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute; H. Direskeneli, MD, Professor of Medicine, Division of Rheumatology, Marmara University, School of Medicine; P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania. 3. From the Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Department of Clinical Epidemiology, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; University of the West of England; University of Bristol; University Hospitals Bristol National Health Service (NHS) Trust, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine; Leeds Teaching Hospitals NHS Trust, Leeds, UK; Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, Pennsylvania; Division of Rheumatology, University of California at Los Angeles, Los Angeles, California; Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center, Columbus, Ohio, USA; Discipline of Medicine, University of Adelaide; The Queen Elizabeth Hospital, Adelaide, Australia; Fatih Sultan Mehmet Training and Research Hospital; Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine, 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. pmerkel@upenn.edu. 4. S.Z. Aydin, Associate Professor in Rheumatology, Division of Rheumatology, University of Ottawa, Ottawa Hospital Research Institute; J.C. Robson, MRCP, PhD, Consultant Senior Lecturer, University of the West of England, and Honorary Senior Lecturer, University of Bristol, and Honorary Consultant in Rheumatology, University Hospitals Bristol NHS Trust; A.G. Sreih, MD, Assistant Professor of Medicine, Division of Rheumatology, University of Pennsylvania; C. Hill, MD, Professor, Discipline of Medicine, University of Adelaide, and Consultant Rheumatologist, The Queen Elizabeth Hospital; F. Alibaz-Oner, MD, Associate Professor of Rheumatology, Fatih Sultan Mehmet Training and Research Hospital; S. Mackie, MRCP, PhD, Associate Professor, Leeds Institute of Rheumatic and Musculoskeletal Medicine, and Honorary Consultant Rheumatologist, Leeds Teaching Hospitals NHS Trust; S. Beard, Bmus, Adelaide, Australia; A. Gul, MD, Professor of Rheumatology, Division of Rheumatology, Department of Internal Medicine, Istanbul University, Istanbul Faculty of Medicine; G. Hatemi, MD, Professor of Medicine, Division of Rheumatology, Department of Internal Medicine, Istanbul University-Cerrahpasa, School of Medicine; T.A. Kermani, MD, MS, Associate Professor of Medicine, Division of Rheumatology, University of California at Los Angeles; A. Mahr, MD, PhD, Professor of Internal Medicine, Department of Internal Medicine, University Paris Diderot; A. Meara, MD, Assistant Professor, Division of Rheumatology and Immunology, The Ohio State University Wexner Medical Center; N. Milman, MD, Assistant Professor, Division of Rheumatology, University of Ottawa, and Division of Rheumatology, The Ottawa Hospital, and Department of Clinical Epidemiology, Ottawa Hospital Research Institute; B. Shea, PhD, Clinical Investigator and Adjunct Professor, Ottawa Hospital Research Institute, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; G. Tómasson, MD, PhD, Assistant Professor of Medicine, Department of Public Health Sciences, University of Iceland; P. Tugwell, MD, Professor, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute; H. Direskeneli, MD, Professor of Medicine, Division of Rheumatology, Marmara University, School of Medicine; P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania. pmerkel@upenn.edu.
Abstract
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.
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.
Authors: Haner Direskeneli; Sibel Z Aydin; Tanaz A Kermani; Eric L Matteson; Maarten Boers; Karen Herlyn; Raashid A Luqmani; Tuhina Neogi; Philip Seo; Ravi Suppiah; Gunnar Tomasson; Peter A Merkel Journal: J Rheumatol Date: 2011-07 Impact factor: 4.666
Authors: Antoine G Sreih; Fatma Alibaz-Oner; Tanaz A Kermani; Sibel Z Aydin; Peter F Cronholm; Trocon Davis; Ebony Easley; Ahmet Gul; Alfred Mahr; Carol A McAlear; Nataliya Milman; Joanna C Robson; Gunnar Tomasson; Haner Direskeneli; Peter A Merkel Journal: J Rheumatol Date: 2017-09-01 Impact factor: 4.666
Authors: Kaitlin A Quinn; Hugh D Alessi; Cristina Ponte; Emily Rose; Mark A Ahlman; Christopher Redmond; Yiming Luo; Ertugrul Cagri Bolek; Carol A Langford; Peter A Merkel; Peter C Grayson Journal: Rheumatology (Oxford) Date: 2022-10-06 Impact factor: 7.046