TY - JOUR
T1 - Core outcome sets specifically for longterm observational studies
T2 - OMERACT special interest group update in rheumatoid arthritis
AU - Lopez-Olivo, Maria A.
AU - Negrón, José B.
AU - Zogala, Richard J.
AU - Carmona, Loreto
AU - Criner, Karla
AU - Goel, Niti
AU - Gonzalez-Lopez, Laura
AU - Ingegnoli, Francesca
AU - Leong, Amye
AU - March, Lyn
AU - Shea, Beverly
AU - Strand, Vibeke
AU - Tugwell, Peter
AU - Westrich-Robertson, Tiffany
AU - Zamora, Natalia V.
AU - Christensen, Robin
AU - Suarez-Almazor, Maria E.
N1 - Funding Information:
From the Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center; Department of Medicine-Immunology, Allergy & Rheumatology, Baylor College of Medicine, Houston, Texas; Kezar Life Sciences, San Francisco; Healthy Motivation, Santa Barbara; Division of Immunology and Rheumatology, Stanford University, Palo Alto, California; Division of Rheumatology, Duke University School of Medicine, Durham, North Carolina; International Foundation for Autoimmune and Autoinflammatory Arthritis, St. Louis, Missouri, USA; Global Alliance for Musculoskeletal Health of the Bone and Joint Decade, Truro, Cornwall, UK; Instituto de Salud Musculoesqueletica, Madrid, Spain; Universidad de Guadalajara, Guadalajara, Mexico; Division of Clinical Rheumatology, G. Pini Hospital, Università degli Studi di Milano, Milan, Italy; Institute of Bone and Joint Research, Sydney Medical School, University of Sydney, Sydney, Australia; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Instituto de Rehabilitacion Psicofisica, Buenos Aires, Argentina; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital; Department of Rheumatology, Odense University Hospital, Odense, Denmark. The Parker Institute is supported by grants from The Oak Foundation. M.A. Lopez-Olivo, MD, PhD, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center; J.B. Negrón, MSc, Instituto de Salud Musculoesqueletica; R.J. Zogala, MD, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center; L. Carmona, MD, PhD, Instituto de Salud Musculoesqueletica; K. Criner, MD, Department of Medicine-Immunology, Allergy & Rheumatology, Baylor College of Medicine; N. Goel, MD, PhD, Kezar Life Sciences, and Division of Rheumatology, Duke University School of Medicine; L. Gonzalez-Lopez, MD, MSc, PhD, Universidad de Guadalajara; F. Ingegnoli, MD, PhD, Division of Clinical Rheumatology, G. Pini Hospital, Università degli Studi di Milano; A. Leong, MBA, Healthy Motivation and the Global Alliance for Musculoskeletal Health of the Bone and Joint Decade; L. March, MBBS, MSc, PhD, FRACP, FAFPHM, Institute of Bone and Joint Research, Sydney Medical School, University of Sydney; B. Shea, PhD, 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; V. Strand, MD, MACR, FACP, Biopharmaceutical Consultant, Portola Valley, California, USA; P. Tugwell, OC, MD, FRCPC, 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; T. Westrich-Robertson, BS, International Foundation for Autoimmune and Autoinflammatory Arthritis; N.V. Zamora, MD, Instituto de Rehabilitacion Psicofisica; R. Christensen, MSc, PhD, Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, and Department of Rheumatology, Odense University Hospital; M.E. Suarez-Almazor, MD, PhD, Section of Rheumatology and Clinical Immunology, University of Texas MD Anderson Cancer Center. Address correspondence to Dr. M.E. Suarez-Almazor, 1515 Holcombe Blvd., Unit 1467, Houston, Texas, USA. E-mail: msalmazor@mdanderson.org Accepted for publication December 18, 2018.
Publisher Copyright:
© 2019 Journal of Rheumatology. All rights reserved.
PY - 2019/9/1
Y1 - 2019/9/1
N2 - Objective. This is an update from the Outcome Measures in Rheumatology (OMERACT) Core Outcomes in Longterm Observational Studies Special Interest Group with a focus on rheumatoid arthritis. Methods. Preliminary data and proposed next steps were outlined and discussed by participants. Results. Domains identified after initial steps (systematic review and qualitative research) were pain, physical functioning, participation (i.e., work, social), longterm symptoms, fertility/family planning, emotional well-being, coping, financial status, and adverse events including death. Conclusion. The group agreed conceptually that short-term core outcomes could be different from longer term ones. Participants emphasized the importance of analyzing the need for core domains specifically for longterm longitudinal observational studies.
AB - Objective. This is an update from the Outcome Measures in Rheumatology (OMERACT) Core Outcomes in Longterm Observational Studies Special Interest Group with a focus on rheumatoid arthritis. Methods. Preliminary data and proposed next steps were outlined and discussed by participants. Results. Domains identified after initial steps (systematic review and qualitative research) were pain, physical functioning, participation (i.e., work, social), longterm symptoms, fertility/family planning, emotional well-being, coping, financial status, and adverse events including death. Conclusion. The group agreed conceptually that short-term core outcomes could be different from longer term ones. Participants emphasized the importance of analyzing the need for core domains specifically for longterm longitudinal observational studies.
KW - Observational studies
KW - Omeract
KW - Outcome assessment
KW - Registries
KW - Rheumatoid arthritis
UR - http://www.scopus.com/inward/record.url?scp=85071733234&partnerID=8YFLogxK
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U2 - 10.3899/jrheum.181076
DO - 10.3899/jrheum.181076
M3 - Article
C2 - 30824644
AN - SCOPUS:85071733234
SN - 0315-162X
VL - 46
SP - 1164
EP - 1167
JO - Journal of Rheumatology
JF - Journal of Rheumatology
IS - 9
ER -