FAIRVASC - building registry interoperability to inform clinical care

对这种罕见的血管炎的研究需要足够大量的数据，才能得出关于治疗和可能的治愈方法的充分信息的结论。然而，在任何一个欧洲国家，患者都相对较少。因此，将几个国家的患者登记数据库结合起来是至关重要的，以建立一个足够大的数据集，以便进行有意义的研究。FAIRVASC是欧洲脉管炎协会和RITA欧洲参考网络的研究项目，汇集了顶尖科学家、临床医生和患者组织。FAIRVASC将使用语义网技术将整个欧洲的脉管炎登记连接到一个“单一的欧洲数据集”中，从而为这些具有挑战性的疾病的新研究打开大门。该计划将确保所有纳入的登记是公平的(可查找、可访问、可互操作、可重复使用)，并确保开发的基础设施与欧洲联合计划的发展保持一致。重要的是，此类国际数据共享的法律和伦理方面是高度优先的--一个专门的团队将确保所有活动符合GDPR和其他规定，同时欧洲主要的脉管炎患者组织将始终活跃，确保尊重患者的优先事项。在FAIRVASC，将对这一庞大的新欧洲资源进行分析，以确定特征(临床和物理特征等)。预测患者的病情发展，以及他们的主要健康风险是什么。未来，这些标记物可以被开发成新的预测工具，帮助医生为个别患者选择最佳治疗方案。

Research into the rare condition vasculitis needs sufficiently large quantities of data to enable well-informed conclusions about treatments and possible cures. However, there are relatively few patients in any one European country. It is thus essential to combine the databases of patient registries of several countries to build a dataset of sufficient size to enable meaningful research.FAIRVASC is a research project of the European Vasculitis Society and RITA European Reference Network, bringing together leading scientists, clinicians and patient organisations. FAIRVASC will use semantic-web technologies to link vasculitis registries across Europe into a ‘single European dataset’, and thus open the door to new research into these challenging diseases. The programme will ensure that all included registries are FAIR (findable, accessible, interoperable, reusable) and that the infrastructure developed is aligned with developments in the European Joint Programme.Importantly, the legal and ethical aspects of such international data sharing are a high priority – a dedicated team will ensure that all activities comply with the GDPR and other regulations, while the main European vasculitis patient organisation will be active throughout, ensuring that patient priorities are respected.In FAIRVASC, this large new European resource will be analysed to identify features (clinical and physical characteristics, etc.) that predict how a patient’s illness will develop, and what their major health risks are. These markers can, in the future, be developed into new predictive tools that help doctors to choose the best treatment options for the individual patient.