Listening to patients, for the patients: The COVAD Study-Vision, organizational structure, and challenges
Articolo
Data di Pubblicazione:
2024
Abstract:
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.
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.
Tipologia CRIS:
1.1 Articolo in rivista
Keywords:
PROMs; autoimmune; collaboration; digital; research; rheumatology; survey.
Elenco autori:
M, Joshi; N, Darooka; S, Saha; S, Dyball; P, Sen; P, Yaadav; M, Javaid; E, Kadam; Sk, Shinjo; D, Dey; L, Cavagna; A, Makol; Cet, Gutiérrez; Uribe CV, Caballero; M, Kuwana; Gr, Burmester; N, Ziade; C, Wincup; L, Andreoli; I, Parodis; Al, Tan; F, Guillemin; J, Knitza; G, Wang; N, Dalbeth; T, Velikova; Ae, Gracia-Ramos; E, Nikiphorou; J, Day; H, Chinoy; R, Aggarwal; V, Agarwal; L, Gupta; Dahou Makhloufi, Chafia; Gabriel Ferreyra Garrott, Leandro; Vardanyan, Valentina; Sadanand Limaye, Vidya; Srivastav, Nilesh; Day, Jessica; Tanveer Hasan, A. T. M.; Saha, Sreoshy; Volkava, Marharyta; Yangchen, Sonam; Luz Felipe da Silva, Dimitri; Andre Monticielo, Odirlei; Katsuyuki Shinjo, Samuel; Shumnalieva, Russka; Svetoslavova Dacheva, Rositsa; Velikova, Tsvetelina; Rattanak, Koy; Kemta Lekpa, Fernando; Landon-Cardinal, Océane; Ocampo, Vanessa; Francisca Bozán Pérez, María; Valenzuela, Antonia; Wang, Guochun; So, Ho; Tang, Iris; KM Wong, Edmund; Enrique Toro Gutiérrez, Carlos; Herrera Uribe, Sebastian; Vinicio Caballero-Uribe, Carlo; Padjen, Ivan; Kardum, Zeljka; Parperis, Konstantinos; Schreiber, Karen; Then Báez, Jossiell; Hamdy Abdellatif Mohammed, Reem; Mohamed Lotfy, Hala; Abdel Rahman Saleh, Walaa; Eissa, Mervat; Gheita, Tamer A.; Rios, Carlos; Meisalu, Sandra; Abdissa Adugna, Becky; Giannini, Margherita; Campagne, Julien; Meyer, Alain; Guillemin, Francis; Labinsky, Hannah; Burmester, Gerd-Rüdiger; Knitza, Johannes; Dey, Dzifa; Panagiotopoulos, Alexandros; Bran Ordóñez, Andrea; Nagy-Vincze, Melinda; Agarwal, Vikas; Barman, Bhupen; Preet Singh, Yogesh; Pande, Arunkumar R.; Kadam, Esha; Yaadav, Praggya; Sen, Parikshit; Parihar, Jasmine; M. R., Lakshmi; Sarkar, Manali; Anggoro Kusumo Wibowo, Suryo; Masoumi, Maryam; Maroof, Avin; Adnan Redha, Asal; Aharonov, Or; Mosca, Marta; Del Papa, Nicoletta; Fabiola, Atzeni; Sebastiani, Marco; Franceschini, Franco; Paolo Sainaghi, Pier; Giovanna Danielli, Maria; Venerito, Vincenzo; Giollo, Alessandro; Andreoli, Laura; Alluno, Alessia; Benfaremo, Devis; Paci, Valentino; Damiani, Giovanni; Hysa, Elvis; Lucchini, Matteo; Lo Gullo, Alberto; Cavagna, Lorenzo; Fornaro, Marco; Yoshida, Akira; Abe, Saori; Kuwana, Masataka; Nakashima (Sasai), Ran; Alnaimat, Fatima; Trimova, Gulzhan; Bekaryssova, Dana; Kalman Genga, Eugene; Ziade, Nelly; Salem Hashad, Soad; Ayoub, Laila; Sazliyana Shaharir, Syahrul; Chou Luan, Tan; Magro, Rosalie; Adrian Zamora Tehozol, Erick; García-De La Torre, Ignacio; Colunga-Pedraza, Iris J.; Merayo-Chalico, Javier; Alpizar-Rodriguez, Deshire; Angel Saavedra Salinas, Miguel; Edgar Gracia-Ramos, Abraham; Sadovici-Bobeica, Victoria; Dandii, Zulgerel; Hmamouchi, Ihsane; Vaidya, Binit; Fernando Perez Garcia, Luis; Dalbeth, Nicola; Calixta Escalante Mendoza, Idania; Mauriel Uriarte Hernandez, Christian; Elh Ibrahim Fanata, Moussa; Ima-Edomwonyi, Uyiekpen; Dedeke, Ibukunoluwa; Emorinken, Airenakho; Madu Nwankwo, Henry; Babatunde Olaosebikan, Hakeem; Okwara, Celestine; Uchechukwu, Tralagba; Hassan, Batool; Rasheed Babur Salim, Uzma; Colman Mc Leod, Nelly; Francisco Ugarte-Gil, Manuel; Pimentel-Quiroz, Victor; Traboco, Lisa S.; Makowska, Joanna; Opinc-Rosiak, Aleksandra; Milchert, Marcin; Sousa Inês, Luís; Al Emadi, Samar; Alexandru, Cristina; Bobircă, Anca; Cobilinschi, Claudia; Aleksandrovna Gromova, Margarita; Alexandre, Mubirigi; El Kibbe, Lina; Mohammed Halabi, Hussein; Miskovic, Rada; Santosa, Anindita; Chua, Desmond; Sieiro Santos, Cristiana; Loarce-Martos, Jesús; Prieto-González, Sergio; Molina-Collada, Juan; Lakmini Dandeniya, Chathurika; Seri Ibrahim Mohamed, Ahmed; Parodis, Ioannis; Micheroli, Raphael; Christ, Lisa; Distler, Oliver; Alchama, Nada; Chen, Yi-Ming; Tseng, Chih-Wei; Akarawatcharangura, Phonpen; Katchamart, Wanruchada; Hamdi, Wafa; Üsküdar Cansu, Döndü; Yıldırım, Reşit; Izci Duran, Tugba; Gokcen, Neslihan; Kulyk, Myroslava; Mohamed Ismail Moustafa, Nesreen; Gupta, Latika; Chinoy, Hector; Nikiphorou, Elena; Pauling, John D.; Wi
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