Background In 2017, the European Commission launched 24 European Reference Networks
(ERNs). 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. Patient summary We analysed the patient
population with rare urorectogenital diseases or complex conditions within the ERN
eUROGEN network between 2013 and 2019. Clinical activity was found to increase, but
differences in patient numbers were evident between healthcare providers. In order
to acquire valid patient numbers, both improved definitions of diagnostic codes and
greater insight into the data-gathering process are required.
