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Core Outcome Sets Specifically for Longterm Observational Studies: OMERACT Special Interest Group Update in
Maria A Lopez-Olivo1,2, José B Negrón1,2, Richard J Zogala1,2
1From 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.
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.
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