FAIRVASC - building registry interoperability to inform clinical care

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.

对罕见状况血管炎的研究需要足够大量的数据，以实现有关治疗和可能治愈的完善结论。但是，任何一个欧洲国家的患者都相对较少。因此，必须将几个国家的患者注册机构的数据库结合起来，以构建足够大小的数据集以实现有意义的研究。Fairvasc是欧洲血管炎协会和RITA欧洲参考网络的研究项目，将领先的科学家，临床医生和患者组织召集在一起。 Fairvasc将使用语义 - Web技术将欧洲的血管炎登记处与“单一欧洲数据集”联系起来，从而为这些挑战疾病开辟了新的研究。 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在Fairvasc中，将分析这种大量的欧洲新资源，以识别预测患者疾病将如何发展以及其主要健康风险的特征（临床和身体特征等）。将来，这些标记可以发展为新的预测工具，可帮助医生为个体患者选择最佳治疗选择。