SIOPEN-R-NET – Learnings from more than 20 years operations of Europe’s core neuroblastoma IT research infrastructure

Background – Data from paediatric cancer patients are typically collected in various distributed databases along a patient’s journey, such as clinical trial systems, biobanks, registries, image management servers, etc. Typically, when projects and trials end, data stored in the respective databases are backed up but access to such backed-up data becomes substantially complicated.
Methods – The SIOPEN-R-NET is an IT research infrastructure that was set up starting in 2002. Since then, clinical, biological, and imaging data have been collected in various communicating systems. In 2024, the SIOPEN BIOPORTAL went online, which represents a European neuroblastoma registry that acts as a core component, with links to various neuroblastoma trials.
Results – Data management within the SIOPEN-R-NET proved to be flexible (even in case of multiple amendments), sustainable for more than 20 years, linkable, and secure. Currently, the SIOPEN-R-NET holds clinical data from 6 SIOPEN trials (LNESG-2, LINES, HRNBL1, LTI, OMS, VERITAS). Based on the European Patient Identity (EUPID) Services, these databases are connected to various other contexts, either temporarily for specific projects (e.g., PRIMAGE, MONALISA), or on a long-term basis, such as for the SIOPEN image management server, the INRG database or the SIOPEN BIOPORTAL. Even analysis long after end of study (e.g., 10 years follow-up analysis) can be supported, as currently conducted for the LNESG-2 study.
Conclusion – IT infrastructures in rare diseases such as paediatric oncology need to be flexible, sustainable, and linkable in a privacy-preserving way. The SIOPEN-R-NET together with the EUPID Services represent a reference infrastructure for rare disease research in Europe.