Listening to patients, for the patients: The COVAD Study-Vision, organizational structure, and challenges

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Listening to patients, for the patients : The COVAD Study-Vision, organizational structure, and challenges

Joshi, Mrudula (författare): Byramjee Jeejeebhoy Government Medical College and Sassoon General Hospitals, Pune, India

Darooka, Naitica (författare): Seth Gordhandhas Sunderdas Medical College and King Edwards Memorial Hospital, Mumbai, Maharashtra, India

Saha, Sreoshy (författare): Mymensingh Medical College, Mymensingh, Bangladesh

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Dyball, Sarah (författare): Centre for Epidemiology Versus Arthritis, Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK; Kellgren Centre for Rheumatology, Manchester University Hospitals NHS Foundation Trust, Manchester, UK

Sen, Parikshit (författare): Maulana Azad Medical College, Delhi, India

Yaadav, Praggya (författare): Maharashtra Institute of Medical Sciences and Research, Latur, Maharashtra, India

Javaid, Mahnoor (författare): Medical college, Aga Khan University, Karachi, Pakistan

Kadam, Esha (författare): Seth Gordhandhas Sunderdas Medical College and King Edwards Memorial Hospital, Mumbai, Maharashtra, India

Shinjo, Samuel Katsuyuki (författare): Division of Rheumatology, Faculdade de Medicina FMUSP, Universidade de Sao Paulo, Sao Paulo, Brazil

Dey, Dzifa (författare): Department of Medicine and Therapeutics, University of Ghana School of Medicine and Dentistry, College of Health Sciences, Accra, Ghana

Cavagna, Lorenzo (författare): Rheumatology Unit, Dipartimento di Medicine Interna e Terapia Medica, Università degli studi di Pavia, Pavia, Italy

Makol, Ashima (författare): Division of Rheumatology, Mayo Clinic, Rochester Minnesota, USA

Gutiérrez, Carlos Enrique Toro (författare): Reference Center for Osteoporosis, Rheumatology and Dermatology, Pontifica Universidad Javeriana Cali, Cali, Colombia

Caballero Uribe, Carlo V. (författare): Department of Medicine, Hospital Universidad del Norte, Barranquilla, Atlantico, Colombia

Kuwana, Masataka (författare): Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, Tokyo, Japan

Burmester, Gerd-Ruediger (författare): Department of Rheumatology and Clinical Immunology, Charité – University Medicine Berlin, Free University and Humboldt University Berlin, Berlin, Germany

Ziade, Nelly (författare): Rheumatology Department, Saint-Joseph University, Beirut, Lebanon; Rheumatology Department, Hotel-Dieu de France Hospital, Beirut, Lebanon

Wincup, Chris (författare): Department of Rheumatology, King's College Hospital, London, UK

Andreoli, Laura (författare): Rheumatology and Clinical Immunology Unit, ASST Spedali Civili and University of Brescia, Brescia, Italy; Department of Clinical and Experimental Sciences, University of Brescia, Brescia, Italy

Parodis, Ioannis, 1981- (författare): Örebro universitet,Institutionen för medicinska vetenskaper,Region Örebro län,Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, Stockholm, Sweden; Department of Rheumatology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden

Tan, Ai Lyn (författare): NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals Trust, Leeds, UK; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK

Guillemin, Francis (författare): EA 4360 Apemac, Université de Lorraine, Nancy, France; Inserm, CHRU Nancy, CIC-1433 Epidémiologie Clinique, Université de Lorraine, Nancy, France

Knitza, Johannes (författare): Medizinische Klinik 3 – Rheumatologie und Immunologie, Universitätsklinikum Erlangen, Friedrich-Alexander-Universität Erlangen-Nürnberg, Erlangen, Deutschland; Institute for Digital Medicine, University Hospital Marburg, Philipps-University Marburg, Marburg, Germany

Wang, Guochun (författare): Department of Rheumatology, China-Japan Friendship Hospital, Beijing, China

Dalbeth, Nicola (författare): Department of Medicine, University of Auckland, Auckland, New Zealand

Velikova, Tsvetelina (författare): Laboratory of Clinical Immunology, Faculty of Medicine, Lozenetz University Hospital, St. Kliment Ohridski University, Sofia, Bulgaria

Gracia-Ramos, Abraham Edgar (författare): Department of Internal Medicine, General Hospital, National Medical Center “La Raza”, Instituto Mexicano del Seguro Social, Mexico City, Mexico

Nikiphorou, Elena (författare): Centre for Rheumatic Diseases, King's College London, London, UK; Rheumatology Department, King's College Hospital, London, UK

Day, Jessica (författare): Department of Rheumatology, Royal Melbourne Hospital, Parkville, Victoria, Australia; Walter and Eliza Hall Institute of Medical Research, Parkville, Victoria, Australia; Department of Medical Biology, University of Melbourne, Parkville, Victoria, Australia

Chinoy, Hector (författare): Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, The University of Manchester, Manchester, UK; National Institute for Health Research Manchester Biomedical Research Centre, Manchester University NHS Foundation Trust, The University of Manchester, Manchester, UK; Department of Rheumatology, Salford Royal NHS Foundation Trust, Manchester Academic Health Science Centre, Salford, UK

Aggarwal, Rohit (författare): Division of Rheumatology and Clinical Immunology, University of Pittsburgh School of Medicine, Pittsburgh Pennsylvania, USA

Agarwal, Vikas (författare): Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India

Gupta, Latika (författare): Division of Musculoskeletal and Dermatological Sciences, Faculty of Biology, Medicine and Health, Manchester Academic Health Science Centre, The University of Manchester, Manchester, UK; Department of Rheumatology, Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, UK

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(creator_code:org_t)

John Wiley & Sons, 2024
2024
Engelska.
Ingår i: International Journal of Rheumatic Diseases. - : John Wiley & Sons. - 1756-1841 .- 1756-185X. ; 27:5

Relaterad länk:: https://doi.org/10.1...; visa fler...; https://urn.kb.se/re...; https://doi.org/10.1...; visa färre...

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Background: The pandemic presented unique challenges for individuals with autoimmune and rheumatic diseases (AIRDs) due to their underlying condition, the effects of immunosuppressive treatments, and increased vaccine hesitancy.Objectives: The COVID-19 vaccination in autoimmune diseases (COVAD) study, a series of ongoing, patient self-reported surveys were conceived with the vision of being a unique tool to gather patient perspectives on AIRDs. It involved a multinational, multicenter collaborative effort amidst a global lockdown.Methods: Leveraging social media as a research tool, COVAD collected data using validated patient-reported outcomes (PROs). The study, comprising a core team, steering committee, and global collaborators, facilitated data collection and analysis. A pilot-tested, validated survey, featuring questions regarding COVID-19 infection, vaccination and outcomes, patient demographics, and PROs was circulated to patients with AIRDs and healthy controls (HCs).Discussion: We present the challenges encountered during this international collaborative project, including coordination, data management, funding constraints, language barriers, and authorship concerns, while highlighting the measures taken to address them.Conclusion: Collaborative virtual models offer a dynamic new frontier in medical research and are vital to studying rare diseases. The COVAD study demonstrates the potential of online platforms for conducting large-scale, patient-focused research and underscores the importance of integrating patient perspective into clinical care. Care of patients is our central motivation, and it is essential to recognize their voices as equal stakeholders and valued partners in the study of the conditions that affect them.

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Listening to patients, for the patients : The COVAD Study-Vision, organizational structure, and challenges

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