The Challenge of Data Privacy Compliant Registry Based Research

Large scale use of real world data in vascular research projects has become a central point for discussion among scientific collaborations worldwide. As there is a distinct diversity of patients with various vascular diseases undergoing a broad range of diagnostic and treatment approaches, it remains unclear whether results from randomised controlled trials (RCTs) can always reflect the non-homogeneous treatment reality. In addition, the design of a RCT is not suited for quality improvement. To improve the paucity of evidence and to implement quality improvement in vascular maintenance, several national registries and international collaborations such as VASCUNET (including 12 registries in Europe, Australia, and New Zealand) or the International Consortium of Vascular Registries (ICVR) are collecting an increasing amount of data.