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.

中文翻译：

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将稻草变成黄金：描述受 COVID-19 大流行启发的破坏性风湿病研究平台

临床研究项目通常使用传统方法，其中数据收集和签署知情同意书依赖于患者对研究机构的访问。然而，在医学界迫切需要信息的充满挑战的时期，例如当前的 COVID-19 大流行，使用可以快速收集大量患者数据的数字平台变得更加紧迫。在目前的手稿中，我们描述了一个新的数字风湿病研究平台，由近 5000 名自身免疫性疾病患者和健康对照者组成，该平台在 COVID-19 大流行期间迅速建立，但在未来是可持续的。使用该平台，可以通过问卷收集统一的患者数据，并将其存储在一个易于分析的数据库中。此外，该平台促进了患者和研究人员之间的双向交流，使患者成为真正的研究伙伴。此外，已经在这一庞大的患者队列中实施了通过手指刺血进行常规和特定实验室测量的血液采集，这可能不仅适用于研究环境，还适用于临床护理。最后，我们讨论了我们平台的挑战和潜在的未来应用，包括为选定的患者群体提供量身定制的信息和促进临床试验的患者招募。这不仅适用于研究环境，也适用于临床护理。最后，我们讨论了我们平台的挑战和潜在的未来应用，包括为选定的患者群体提供量身定制的信息和促进临床试验的患者招募。这不仅适用于研究环境，也适用于临床护理。最后，我们讨论了我们平台的挑战和潜在的未来应用，包括为选定的患者群体提供量身定制的信息和促进临床试验的患者招募。