Spinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemic
Abstract Clinical research projects often use traditional methods in which data collection and signing informed consent forms rely on patients’ visits to the research institutes. However, during challenging times when the medical community is in dire need of information, such as the current COVID-19...
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doaj-93bcf9ee9f314bc7b767227da5f2dbca2021-08-08T11:05:07ZengBMCArthritis Research & Therapy1478-63622021-08-012311610.1186/s13075-021-02574-zSpinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemicL. Boekel0F. Hooijberg1E. H. Vogelzang2P. L. Klarenbeek3W. H. Bos4S. W. Tas5G. J. Wolbink6Department of Rheumatology, Amsterdam Rheumatology and Immunology CenterDepartment of Rheumatology, Amsterdam Rheumatology and Immunology CenterDepartment of Medical Microbiology and Infection Prevention, Amsterdam UMCAmsterdam Rheumatology and Immunology Center, Amsterdam UMCDepartment of Rheumatology, Amsterdam Rheumatology and Immunology CenterAmsterdam Rheumatology and Immunology Center, Amsterdam UMCDepartment of Rheumatology, Amsterdam Rheumatology and Immunology CenterAbstract Clinical research projects often use traditional methods in which data collection and signing informed consent forms rely on patients’ visits to the research institutes. However, during challenging times when the medical community is in dire need of information, such as the current COVID-19 pandemic, it becomes more urgent to use digital platforms that can rapidly collect data on large numbers of patients. In the current manuscript, we describe a novel digital rheumatology research platform, consisting of almost 5000 patients with autoimmune diseases and healthy controls, that was set up rapidly during the COVID-19 pandemic, but which is sustainable for the future. Using this platform, uniform patient data can be collected via questionnaires and stored in a single database readily available for analysis. In addition, the platform facilitates two-way communication between patients and researchers, so patients become true research partners. Furthermore, blood collection via a finger prick for routine and specific laboratory measurements has been implemented in this large cohort of patients, which may not only be applicable for research settings but also for clinical care. Finally, we discuss the challenges and potential future applications of our platform, including supplying tailored information to selected patient groups and facilitation of patient recruitment for clinical trials.https://doi.org/10.1186/s13075-021-02574-z |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
L. Boekel F. Hooijberg E. H. Vogelzang P. L. Klarenbeek W. H. Bos S. W. Tas G. J. Wolbink |
spellingShingle |
L. Boekel F. Hooijberg E. H. Vogelzang P. L. Klarenbeek W. H. Bos S. W. Tas G. J. Wolbink Spinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemic Arthritis Research & Therapy |
author_facet |
L. Boekel F. Hooijberg E. H. Vogelzang P. L. Klarenbeek W. H. Bos S. W. Tas G. J. Wolbink |
author_sort |
L. Boekel |
title |
Spinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemic |
title_short |
Spinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemic |
title_full |
Spinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemic |
title_fullStr |
Spinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemic |
title_full_unstemmed |
Spinning straw into gold: description of a disruptive rheumatology research platform inspired by the COVID-19 pandemic |
title_sort |
spinning straw into gold: description of a disruptive rheumatology research platform inspired by the covid-19 pandemic |
publisher |
BMC |
series |
Arthritis Research & Therapy |
issn |
1478-6362 |
publishDate |
2021-08-01 |
description |
Abstract Clinical research projects often use traditional methods in which data collection and signing informed consent forms rely on patients’ visits to the research institutes. However, during challenging times when the medical community is in dire need of information, such as the current COVID-19 pandemic, it becomes more urgent to use digital platforms that can rapidly collect data on large numbers of patients. In the current manuscript, we describe a novel digital rheumatology research platform, consisting of almost 5000 patients with autoimmune diseases and healthy controls, that was set up rapidly during the COVID-19 pandemic, but which is sustainable for the future. Using this platform, uniform patient data can be collected via questionnaires and stored in a single database readily available for analysis. In addition, the platform facilitates two-way communication between patients and researchers, so patients become true research partners. Furthermore, blood collection via a finger prick for routine and specific laboratory measurements has been implemented in this large cohort of patients, which may not only be applicable for research settings but also for clinical care. Finally, we discuss the challenges and potential future applications of our platform, including supplying tailored information to selected patient groups and facilitation of patient recruitment for clinical trials. |
url |
https://doi.org/10.1186/s13075-021-02574-z |
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