TY - JOUR
T1 - Listening to patients, for the patients
T2 - The COVAD Study—Vision, organizational structure, and challenges
AU - Joshi, Mrudula
AU - Darooka, Naitica
AU - Saha, Sreoshy
AU - Dyball, Sarah
AU - Sen, Parikshit
AU - Yaadav, Praggya
AU - Javaid, Mahnoor
AU - Kadam, Esha
AU - Shinjo, Samuel Katsuyuki
AU - Dey, Dzifa
AU - Cavagna, Lorenzo
AU - Makol, Ashima
AU - Gutiérrez, Carlos Enrique Toro
AU - Caballero Uribe, Carlo V.
AU - Kuwana, Masataka
AU - Burmester, Gerd Rüdiger
AU - Ziade, Nelly
AU - Wincup, Chris
AU - Andreoli, Laura
AU - Parodis, Ioannis
AU - Tan, Ai Lyn
AU - Guillemin, Francis
AU - Knitza, Johannes
AU - Wang, Guochun
AU - Dalbeth, Nicola
AU - Velikova, Tsvetelina
AU - Gracia-Ramos, Abraham Edgar
AU - Nikiphorou, Elena
AU - Day, Jessica
AU - Chinoy, Hector
AU - Aggarwal, Rohit
AU - Agarwal, Vikas
AU - Gupta, Latika
N1 - Publisher Copyright:
© 2024 The Authors. International Journal of Rheumatic Diseases published by Asia Pacific League of Associations for Rheumatology and John Wiley & Sons Australia, Ltd.
PY - 2024/5
Y1 - 2024/5
N2 - 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.
AB - 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.
KW - PROMs
KW - autoimmune
KW - collaboration
KW - digital
KW - research
KW - rheumatology
KW - survey
UR - http://www.scopus.com/inward/record.url?scp=85192510449&partnerID=8YFLogxK
U2 - 10.1111/1756-185X.15161
DO - 10.1111/1756-185X.15161
M3 - Article
AN - SCOPUS:85192510449
SN - 1756-1841
VL - 27
JO - International Journal of Rheumatic Diseases
JF - International Journal of Rheumatic Diseases
IS - 5
M1 - e15161
ER -