Research ArticleArticle
Current Status of Outcome Measure Development in Vasculitis
Peter A. Merkel, Sibel Z. Aydin, Maarten Boers, Christina Cornell, Haner Direskeneli, Don Gebhart, Gulen Hatemi, Raashid Luqmani, Eric L. Matteson, Nataliya Milman, Joanna Robson, Philip Seo and Gunnar Tomasson
The Journal of Rheumatology January 2014, jrheum.131248; DOI: https://doi.org/10.3899/jrheum.131248
Peter A. Merkel
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Sibel Z. Aydin
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Maarten Boers
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Christina Cornell
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Haner Direskeneli
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Don Gebhart
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Gulen Hatemi
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Raashid Luqmani
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Eric L. Matteson
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Nataliya Milman
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Joanna Robson
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Philip Seo
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Gunnar Tomasson
From the Division of Rheumatology and Department of Epidemiology, University of Pennsylvania, Philadelphia, Pennsylvania, USA; Department of Rheumatology, Istanbul Medeniyet University, Istanbul, Goztepe Training and Research Hospital, Istanbul, Turkey; Department of Epidemiology and Biostatistics, VU University Medical Center; Amsterdam, The Netherlands; Department of Rheumatology, Marmara University School of Medicine, Istanbul, Turkey; Department of Otolaryngology, Ohio State University Medical Center, Columbus, Ohio, USA; Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, Istanbul, Turkey; Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, UK; Division of Rheumatology, and Division of Epidemiology, Mayo Clinic College of Medicine, Rochester, Minnesota, USA; Division of Rheumatology, University of Ottawa, Ottawa, Ontario, Canada; Division of Rheumatology, Johns Hopkins University, Baltimore, Maryland, USA; University of Iceland, Reykjavik, Iceland. Supported by the Vasculitis Clinical Research Consortium (www.RareDiseasesNetwork.org/vcrc) through the US National Institutes of Health/National Institute of Arthritis and Musculoskeletal and Skin Diseases (U54AR057319), the National Center for Research Resources (U54 RR01949703), the Office of Rare Diseases Research/National Center for Advancing Translational Sciences, and the Patient-Centered Outcomes Research Institute. The UK National Institute for Health Research Musculoskeletal Biomedical Research Unit, Oxford, has supported Professor Luqmani and Dr. Robson. P.A. Merkel, MD, MPH, Professor of Medicine and Epidemiology, Division of Rheumatology and Department of Epidemiology, University of Pennsylvania; S.Z. Aydin, MD, Associate Professor, Department of Rheumatology, Istanbul Medeniyet University, Goztepe Training and Research Hospital; M. Boers, MD, MSc, PhD, Professor of Clinical Epidemiology, Department of Epidemiology and Biostatistics, VU University Medical Center; C. Cornell, Chapel Hill, North Carolina, USA; H. Direskeneli, MD, Professor of Rheumatology, Department of Rheumatology, Marmara University School of Medicine; D. Gebhart, MD, Emeritus Clinical Professor, Department of Otolaryngology, Ohio State University Medical Center; G. Hatemi, MD, Associate Professor, Division of Rheumatology, Department of Internal Medicine, Cerrahpasa Medical School, Istanbul University, R. Luqmani, DM, FRCP, FRCPE, Professor, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; E.L. Matteson, MD, MPH, Professor of Medicine, Division of Rheumatology; Consultant, Divisions of Rheumatology and Epidemiology, Mayo Clinic College of Medicine; N. Milman, MD, Clinical Scholar, Division of Rheumatology, University of Ottawa; J. Robson, MBBS, PhD, MRCP, Clinical Lecturer in Rheumatology, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford; P. Seo, MD, MHS, Assistant Professor of Medicine, Division of Rheumatology, Johns Hopkins University; G. Tomasson, MD, Research Associate, University of Iceland. Address correspondence to Dr. Merkel, Division of Rheumatology, University of Pennsylvania, 8th Floor Penn Tower, 3400 Spruce St., Philadelphia, Pennsylvania 19104, USA. E-mail: pmerkel{at}upenn.edu
Abstract
The conduct of randomized controlled trials for vasculitis, especially for the antineutrophil cytoplasmic antibody-associated vasculitides [AAV, granulomatosis with polyangiitis (Wegener’s) and microscopic polyangiitis], has been greatly advanced by the development, use, and acceptance of validated outcome measures. Trials have subsequently provided the opportunity to validate and refine reliable, valid outcome measures for these multisystemic and relapsing rare diseases. The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group was formed in 2004 to foster development of validated and widely accepted outcomes in vasculitis using data-driven analyses, a dedication to building consensus, and adherence to, and guidance by, the principles of the OMERACT approach. This work led to the endorsement by OMERACT of the core set of domains and associated outcome measures for AAV. Next steps for the study of existing outcome tools in AAV include better definition of response criteria through development of more data-driven weighting of the elements of activity and damage assessment. The Working Group is now also embarking on a series of linked projects to develop validated patient-reported outcomes for use in clinical research in vasculitis. Additionally, the Working Group is studying how current methods of disease assessment and plans for new outcomes can be informed by the conceptual framework of the International Classification of Function of the World Health Organization. The success of the Group’s work in AAV has also led to a formal process for developing outcomes for the large vessel vasculitides (Takayasu arteritis and giant cell arteritis) and Behçet disease.
In this issue
The Journal of Rheumatology
Vol. 53, Issue 2
1 Feb 2026
Current Status of Outcome Measure Development in Vasculitis
Peter A. Merkel, Sibel Z. Aydin, Maarten Boers, Christina Cornell, Haner Direskeneli, Don Gebhart, Gulen Hatemi, Raashid Luqmani, Eric L. Matteson, Nataliya Milman, Joanna Robson, Philip Seo, Gunnar Tomasson
The Journal of Rheumatology Jan 2014, jrheum.131248; DOI: 10.3899/jrheum.131248
Current Status of Outcome Measure Development in Vasculitis
Peter A. Merkel, Sibel Z. Aydin, Maarten Boers, Christina Cornell, Haner Direskeneli, Don Gebhart, Gulen Hatemi, Raashid Luqmani, Eric L. Matteson, Nataliya Milman, Joanna Robson, Philip Seo, Gunnar Tomasson
The Journal of Rheumatology Jan 2014, jrheum.131248; DOI: 10.3899/jrheum.131248
