دورية أكاديمية
OMERACT systemic lupus erythematosus domain survey.
| العنوان: | OMERACT systemic lupus erythematosus domain survey. |
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| المؤلفون: | Nielsen W; Institute of Medical Science, University of Toronto, Toronto, Canada; Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Western Hospital, Toronto, ON, Canada., Strand V; Division of Immunology and Rheumatology, Stanford University School of Medicine, Palo Alto, California, USA., Simon L; SDG, LLC, Cambridge, Massachusetts, USA., Pinsker E; University of Toronto, Surgery, St. Michael's Hospital, 800-55 Queen Street East, Toronto, ON M5C IR6, Canada., Bonilla D; Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Western Hospital, Toronto, ON, Canada., Morand E; Centre for Inflammatory Disease, Monash University, Melbourne, Australia., Thumboo J; Department of Rheumatology and Immunology, Singapore General Hospital, Singapore., Aringer M; Division of Rheumatology, Department of Medicine III, University Medical Center and Faculty of Medicine TU Dresden, Dresden, Germany., Mosca M; Department of Clinical and Experimental Medicine, University of Pisa, Italy., Bruce I; Centre for Epidemiology, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK; NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, UK., Parodis I; Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Department of Gastroenterology, Dermatology and Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden., Kim A; Division of Rheumatology, Department of Medicine, Washington University School of Medicine, St. Louis, MO, USA., Desai M; Faculty of Design, OCAD University, Toronto, Ontario, Canada., Enman Y; Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden; Swedish Rheumatism Association, Stockholm, Sweden., Shea B; Knowledge Synthesis Group, Clinical Epidemiology Program, Ottawa Hospital Research Institute, Centre for Practice-Changing Research, 501 Smyth Road, Box 201, Ottawa, ON K1H 8L6, Canada; School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada., Wallace DJ; Division of Rheumatology, Department of Medicine, Cedars-Sinai, USA; David Geffen School of Medicine at UCLA, Cedars-Sinai Medical Center, Los Angeles, California, USA., Chaichian Y; Division of Immunology and Rheumatology, Stanford University School of Medicine, Palo Alto, California, USA., Navarra S; Section of Rheumatology, Department of Medicine, University of Santo Tomas, Manila, Philippines., Aranow C; Center for Autoimmune, Musculoskeletal and Hematopoietic Diseases, Feinstein Institutes for Medical Research, Manhasset, New York, USA., Mackay M; Section of Rheumatology and Gwen Knapp Center for Lupus and Immunology Research, University of Chicago, Chicago, Illinois, USA., Trotter K; Section of Rheumatology and Gwen Knapp Center for Lupus and Immunology Research, University of Chicago, Chicago, Illinois, USA., Tayer-Shifman OE; Rheumatology Unit, Meir Medical Center, Kfar Saba, Israel; Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel., Duarte-García A; Division of Rheumatology, Mayo Clinic, Rochester, MN, USA., Shan Tam L; Department of Medicine & Therapeutics, The Prince of Wales Hospital, The Chinese University of Hong Kong, Hong Kong, China., Ugarte-Gil MF; Grupo Peruano de Estudio de Enfermedades Autoinmunes Sistémicas. Universidad Cientifica del Sur, Lima, Perú; Rheumatology Department. Hospital Nacional Guillermo Almenara Irigoyen, Lima, Peru., Pons-Estel GJ; Grupo Oroño - Centro Regional de Enfermedades Autoinmunes y Reumáticas (GO-CREAR), Rosario, Argentina., Reynolds JA; Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK., Nikpour M; The University of Sydney School of Public Health, Camperdown, NSW 2006, Australia., Hoi A; Centre for Inflammatory Diseases, School of Clinical Sciences, Monash University, Melbourne, Australia., Romero-Diaz J; Instituto Nacional de Ciencias Médicas y Nutrición, México City, Mexico., Aggarwal A; Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow 226014, India., Mok CC; Department of Medicine, Tuen Mun Hospital, New Territories, Hong Kong, China., Fujio K; Department of Allergy and Rheumatology, Graduate School of Medicine, The University of Tokyo, Tokyo 113-8655, Japan., Ramsey-Goldman R; Division of Rheumatology, Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA., Gladman DD; Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Toronto Western Hospital, Toronto, ON, Canada., Arnaud L; Department of Rheumatology, Hôpitaux Universitaires de Strasbourg, INSERM UMR-S 1109, Centre National de Référence des Maladies Auto-immunes Systémiques Rares (RESO), Strasbourg, France., Bultink IEM; Department of Rheumatology, Amsterdam Rheumatology and immunology Center, Amsterdam University Medical Center, Amsterdam, the Netherlands., Ruiz-Irastorza G; Autoimmune Diseases Research Unit, Department of Internal Medicine, BioCruces Health Research Institute, Hospital Universitario Cruces, University of the Basque Country, Bizkaia, Spain., Inês LS; Department of Rheumatology, Centro Hospitalar e Universitario de Coimbra, Coimbra, Portugal; School of Health Sciences, Universidade da Beira Interior, Covilha, Portugal., Appenzeller S; Department of Orthopedics, Rheumatology and Traumatology, School of Medical Science, University of Campinas, Campinas, São Paulo, 13083881, Brazil., Dobrowolski C; Division of Rheumatology, Icahn School of Medicine at Mount Sinai, New York, NY, USA., Clarke AE; Division of Rheumatology, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada., Kamen DL; Department of Medicine, Medical University of South Carolina, Charleston, South Carolina, USA., Barraclough M; Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; Centre for Epidemiology, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK; NIHR Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, UK., Tani C; Rheumatology Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy., Gómez-Puerta JA; Rheumatology Department, Hospital Clínic, Barcelona, Spain., Werth VP; Philadelphia VA Medical Center and Hospital of the University of Pennsylvania, Philadelphia, USA., Katz P; Professor of Medicine and Health Policy, Division of Rheumatology, Department of Medicine, UCSF, Philip R. Lee Institute for Health Policy Studies, USA., Nowrouzi-Kia B; Restore Lab, Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON M5G 1V7, Canada., Johnson SR; Toronto Western Hospital, Mount Sinai Hospital, and University of Toronto, Toronto, Ontario, Canada., Drucker AM; Division of Dermatology, Department of Medicine, University of Toronto and Women's College Hospital, Toronto, Ontario, Canada., Touma Z; Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Canada; University of Toronto Lupus Clinic, Centre for Prognosis Studies in Rheumatic Diseases, Toronto Western Hospital, Toronto, ON, Canada. Electronic address: Zahi.Touma@uhn.ca. |
| مؤلفون مشاركون: | OMERACT SLE Working Group |
| المصدر: | Seminars in arthritis and rheumatism [Semin Arthritis Rheum] 2024 Jul 24; Vol. 68, pp. 152520. Date of Electronic Publication: 2024 Jul 24. |
| Publication Model: | Ahead of Print |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: W.B. Saunders Country of Publication: United States NLM ID: 1306053 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1532-866X (Electronic) Linking ISSN: 00490172 NLM ISO Abbreviation: Semin Arthritis Rheum Subsets: MEDLINE |
| أسماء مطبوعة: | Publication: Philadelphia Pa : W.B. Saunders Original Publication: New York, Stratton. |
| مستخلص: | Background: Since the development of the OMERACT Systemic Lupus Erythematosus (SLE) Core Outcome Set (COS) in 1998, many new SLE domains have been identified and measures developed, creating a need to update the SLE COS. To revisit the 1998 SLE COS and research agenda domains, and generate new candidate domains, we conducted this study of patients with SLE and collaborators. Objective: (1) To evaluate existing candidate SLE domains for inclusion in the SLE COS. (2) To generate additional candidate SLE domains for COS consideration. (3) To engage SLE collaborators, including patients, in developing the updated SLE COS. Methods: The OMERACT SLE Working Group's steering committee developed a survey to assess the importance of candidate SLE domains and generate additional domains for consideration towards the SLE COS. Patients with SLE followed at the University of Toronto Lupus Clinic (patient group) and members of the OMERACT SLE Working Group (collaborator group) were invited to complete the survey between August 2022 and February 2023. Results: A total of 175 patients were invited and 100 completed the survey. Of 178 collaborators invited, 145 completed the survey. Patients tended to prioritize life-impact domains while collaborators prioritized clinical domains. Both patients and collaborators recommended additional domains to those included in the 1998 SLE COS and research agenda. Conclusion: The domain inclusion and importance results demonstrate that patients and collaborators prioritize different domains, so capturing the perspectives of both groups is essential to ensure a holistic assessment of SLE. The results of the study identify domains that already have a high level of agreement for potential inclusion in the SLE COS, domains that require further explanation, and novel domains that warrant consideration. Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. (Copyright © 2024. Published by Elsevier Inc.) |
| فهرسة مساهمة: | Keywords: Core Outcome Set; Domain; Systemic lupus erythematosus |
| تواريخ الأحداث: | Date Created: 20240806 Latest Revision: 20240806 |
| رمز التحديث: | 20240807 |
| DOI: | 10.1016/j.semarthrit.2024.152520 |
| PMID: | 39106780 |
| قاعدة البيانات: | MEDLINE |
Full Text via ClinicalKey 
Full Text Finder | تدمد: | 1532-866X |
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| DOI: | 10.1016/j.semarthrit.2024.152520 |