Medical college, Aga Khan University, Karachi, Pakistan.
Rheumatology Unit, Dipartimento di Medicine Interna e Terapia Medica, Università degli studi di Pavia, Pavia, Italy.
Division of Rheumatology, Mayo Clinic, Rochester Minnesota, USA.
Reference Center for Osteoporosis, Rheumatology and Dermatology, Pontifica Universidad Javeriana Cali, Cali, Colombia.
Department of Medicine, Hospital Universidad del Norte, Barranquilla, Atlantico, Colombia.
Department of Allergy and Rheumatology, Nippon Medical School Graduate School of Medicine, Tokyo, Japan.
Department of Rheumatology and Clinical Immunology, Charité – University Medicine Berlin, Free University and Humboldt University Berlin, Berlin, Germany.
Rheumatology Department, Saint-Joseph University, Beirut, Lebanon; Rheumatology Department, Hotel-Dieu de France Hospital, Beirut, Lebanon.
Department of Rheumatology, King's College Hospital, London, UK.
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.
NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals Trust, Leeds, UK; Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.
EA 4360 Apemac, Université de Lorraine, Nancy, France; Inserm, CHRU Nancy, CIC-1433 Epidémiologie Clinique, Université de Lorraine, Nancy, France.
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.
Department of Rheumatology, China-Japan Friendship Hospital, Beijing, China.
Department of Medicine, University of Auckland, Auckland, New Zealand.
Laboratory of Clinical Immunology, Faculty of Medicine, Lozenetz University Hospital, St. Kliment Ohridski University, Sofia, Bulgaria.
Department of Internal Medicine, General Hospital, National Medical Center “La Raza”, Instituto Mexicano del Seguro Social, Mexico City, Mexico.
Centre for Rheumatic Diseases, King's College London, London, UK; Rheumatology Department, King's College Hospital, London, UK.
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.
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.
Division of Rheumatology and Clinical Immunology, University of Pittsburgh School of Medicine, Pittsburgh Pennsylvania, USA.
Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
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.
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.
John Wiley & Sons, 2024. Vol. 27, no 5, article id e15161