Another very successful ERN eUROGEN webinar (kindly supported by the European Society for Pediatric Urology) took place on 6 December 2023 on Developing a Clinical Decision Support Tool for Posterior Urethral Valves (PUV) and highlighted the importance of the ERN eUROGEN registry.
The webinar was presented by Associate Prof. Yazan Rawashdeh, Consultant Pediatric Urologist at Aarhus University Hospital (DK) and Prof. Magdalena Fossum, Department of Pediatric Surgery, Copenhagen University Hospital, Rigshospitalet (DK) and the Karolinska Institutet, Stockholm (SE), who are co-chairing an ERN eUROGEN Working Group to develop a CDST on PUV, and covered their work’s early, very interesting results so far.
As clinical snapshot datasets on PUV have already been implemented in the ERN eUROGEN registry, Yazan and Magdalena included the first results, enabling the comparison of differences in clinical approaches across different healthcare providers treating patients with PUV across Europe.
The webinar underlined how the registry can and will be used to gather the much-needed evidence for the rare and complex conditions treated by the network’s experts. Where important gaps in knowledge are identified, questions can be added to the registry, and the evidence can be gathered going forward.
It is, of course, a huge advantage that the registry is sustainable due to long-term funding provided by the European Commission, and this will enable us to track patients and their outcomes over >25 years and hopefully lifetimes.
Furthermore, the registries of all 24 ERNs are interoperable due to using the same core data sets, which will allow further collaboration and research with other ERNs like such as ERN ERKNet (the ERN for rare kidney diseases).
