Rare and complex urology: Clinical overview of ERN eUROGEN

Wout Feitz and colleagues, theme Reconstructive & Regenerative Medicine, publish an article in European Urology, which provides an overview and identifies challenges in collecting data at the European level from the ERN eUROGEN patient population.

Background 

In 2017, the European Commission launched 24 thematic European Reference Networks (ERNs). Radboudumc participates in 14 networks and two of these networks are coordinated by Radboudumc: ERN GENTURIS and ERN eUROGEN.

ERN eUROGEN is the network for urorectogenital diseases and complex conditions, and started with 29 full member healthcare providers (HCPs) in 11 countries. It then covered 19 different disease areas distributed over three workstreams (WSs).

Objective

To provide an overview and identify challenges in data collection at European level of the ERN eUROGEN patient population treated by HCPs in the network.

Design, setting, and participants

A retrospective cohort study was conducted of the 29 HCPs who were full members between 2013 and 2019.

Outcome measurements and statistical analysis: Data were extracted from the original HCP applications and the ERN continuous monitoring system. Patient volumes, new patient numbers, and procedures were compared between different WSs, countries, and HCPs. Discrepancies between monitoring and application data were identified.

Results and limitations

Between 2013 and 2019, 122 040 patients required long-term care within the 29 HCPs. The volume of patients treated and procedures undertaken per year increased over time. Large discrepancies were found between patient numbers contained in the application forms and those reported in the continuous monitoring system (0-1357% deviation).

Conclusions

Patient numbers and procedures increased across ERN eUROGEN HCPs. Reliable data extraction appeared challenging, illustrated by the patient volume discrepancies between application forms and the continuous monitoring data. Improved disease definitions, re-evaluation of affiliated HCPs, and valid data extraction are needed for future improvements.

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ERN info in Dutch