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.
[1]Byramjee Jeejeebhoy Govt Med Coll, Pune, India.
[2]Sassoon Gen Hosp, Pune, India.
[3]Seth Gordhandhas Sunderdas Med Coll, Mumbai, Maharashtra, India.
[4]King Edwards Mem Hosp, Mumbai, Maharashtra, India.
[5]Mymensingh Med Coll, Mymensingh, Bangladesh.
[6]Univ Manchester, Ctr Epidemiol Versus Arthrit, Manchester Acad Hlth Sci Ctr, Fac Biol,Div Musculoskeletal & Dermatol Sci, Manchester, England.
[7]Manchester Univ Hosp NHS Fdn Trust, Kellgren Ctr Rheumatol, Manchester, England.
[8]Maulana Azad Med Coll, Delhi, India.
[9]Maharashtra Inst Med Sci & Res, Latur, Maharashtra, India.
[10]Aga Khan Univ, Med Coll, Karachi, Pakistan.
[11]Univ Sao Paulo, Fac Med FMUSP, Div Rheumatol, Sao Paulo, Brazil.
[12]Univ Ghana, Coll Hlth Sci, Sch Med & Dent, Dept Med & Therapeut, Accra, Ghana.
[13]Univ Pavia, Dipartimento Med Interna & Terapia Med, Rheumatol Unit, Pavia, Italy.
[14]Mayo Clin, Div Rheumatol, Rochester, MN USA.
[15]Pontif Univ Javeriana Cali, Reference Ctr Osteoporosis Rheumatol & Dermatol, Cali, Colombia.
[16]Hosp Univ Norte, Dept Med, Barranquilla, Atlantico, Colombia.
[17]Nippon Med Sch, Grad Sch Med, Dept Allergy & Rheumatol, Tokyo, Japan.
[18]Charite, Dept Rheumatol & Clin Immunol, Berlin, Germany.
[19]Free Univ, Berlin, Germany.
[20]Humboldt Univ, Berlin, Germany.
[21]St Joseph Univ, Rheumatol Dept, Beirut, Lebanon.
[22]Hotel Dieu France Hosp, Rheumatol Dept, Beirut, Lebanon.
[23]Kings Coll Hosp London, Dept Rheumatol, London, England.
[24]ASST Spedali Civili & Univ Brescia, Rheumatol & Clin Immunol Unit, Brescia, Italy.
[25]Univ Brescia, Dept Clin & Expt Sci, Brescia, Italy.
[26]Karolinska Inst, Dept Med Solna, Div Rheumatol, Stockholm, Sweden.
[27]Karolinska Univ Hosp, Stockholm, Sweden.
[28]Orebro Univ, Fac Med & Hlth, Dept Rheumatol, Orebro, Sweden.
[29]Leeds Teaching Hosp NHS Trust, NIHR Leeds Biomed Res Ctr, Leeds, England.
[30]Univ Leeds, Leeds Inst Rheumat & Musculoskeletal Med, Leeds, England.
[31]Univ Lorraine, EA APEMAC 4360, Nancy, France.
[32]Univ Lorraine, CHRU Nancy, CIC 1433 Epidemiol Clin, Inserm, Nancy, France.
[33]Univ Klinikum Erlangen, Med Klin 3 Rheumatol & Immunol, Universitatsklinikum Erlangen, Erlangen, Germany.
[34]Philipps Univ Marburg, Univ Hosp Marburg, Inst Digital Med, Marburg, Germany.
[35]China Japan Friendship Hosp, Dept Rheumatol, Beijing, Peoples R China.
[36]Univ Auckland, Dept Med, Auckland, New Zealand.
[37]Lozenetz Univ Hosp, St Kliment Ohridski Univ, Fac Med, Lab Clin Immunol, Sofia, Bulgaria.
[38]Gen Hosp La Raza, Natl Med Ctr, Dept Internal Med, Inst Mexicano Seguro Social, Mexico City, Mexico.
[39]Kings Coll London, Ctr Rheumat Dis, London, England.
[40]Kings Coll Hosp London, Rheumatol Dept, London, England.
[41]Royal Melbourne Hosp, Dept Rheumatol, Parkville, Vic, Australia.
[42]Walter & Eliza Hall Inst Med Res, Parkville, Vic, Australia.
[43]Univ Melbourne, Dept Med Biol, Parkville, Vic, Australia.
[44]Univ Manchester, Manchester Acad Hlth Sci Ctr, Fac Biol Med & Hlth, Div Musculoskeletal & Dermatol Res,Sch Biol Sci, Manchester, England.
[45]Univ Manchester, Manchester Univ NHS Fdn Trust, Natl Inst Hlth Res Manchester Biomed Res Ctr, Manchester, England.
[46]Salford Royal NHS Fdn Trust, Manchester Acad Hlth Sci Ctr, Dept Rheumatol, Salford, England.
[47]Univ Pittsburgh, Sch Med, Div Rheumatol & Clin Immunol, Pittsburgh, PA USA.
[48]Sanjay Gandhi Postgrad Inst Med Sci, Dept Clin Immunol & Rheumatol, Lucknow, India.
[49]Royal Wolverhampton Hosp NHS Trust, Dept Rheumatol, Wolverhampton, England.
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