Department of Rheumatology, Amsterdam Rheumatology and Immunology Center, location Reade, Dr. Jan van Breemenstraat 2, 1056 AB, Amsterdam, the Netherlands.
Department of Medical Microbiology and Infection Prevention, Amsterdam UMC, location AMC, 1105 AZ, Amsterdam, the Netherlands.
Arthritis Res Ther. 2021 Aug 5;23(1):207. doi: 10.1186/s13075-021-02574-z.
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.
临床研究项目通常采用传统方法，其中数据收集和签署知情同意书依赖于患者到研究机构的就诊。然而，在当前的 COVID-19 大流行期间，医疗界急需信息的艰难时期，更需要使用能够快速收集大量患者数据的数字平台。在本手稿中，我们描述了一个新的数字风湿病学研究平台，该平台由近 5000 名自身免疫性疾病患者和健康对照者组成，该平台是在 COVID-19 大流行期间迅速建立的，但未来仍可持续发展。使用该平台，可以通过问卷收集统一的患者数据，并存储在一个便于分析的单一数据库中。此外，该平台还促进了患者和研究人员之间的双向沟通，使患者成为真正的研究合作伙伴。此外，已经在这个大型患者队列中实施了通过指尖采血进行常规和特定实验室检测，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，包括向选定的患者群体提供定制信息以及为临床试验促进患者招募。
