TY - JOUR
T1 - Rare and Complex Urology: Clinical Overview of ERN eUROGEN
AU - Sacco, Emilio
AU - Oomen, Loes
AU - Leijte, Erik
AU - Shilhan, Darren E.
AU - Battye, Michelle
AU - Waltregny, David
AU - Van Der Aa, Frank
AU - Spinoit, Anne-Françoise
AU - Rösch, Wolfgang H.
AU - Schmiedeke, Eberhard
AU - Fisch, Margit
AU - Märzheuser, Stefanie
AU - Gosemann, Jan-Hendrik
AU - Hubertus, Jochen
AU - Rawashdeh, Yazan
AU - Thorup, Jorgen
AU - Heloury, Yves
AU - Leva, Ernesto
AU - Mancini, Mariangela
AU - Bagolan, Pietro
AU - Verkauskas, Gilvydas
AU - Feitz, Wout
AU - Sloots, Cornelius
AU - Czauderna, Piotr
AU - Mauricio, Maria
AU - Holmdahl, Gundela
AU - Abrahamsson, Kate
AU - Thomas, Kay
AU - Cardozo, Linda
AU - Chapple, Christopher
AU - Sangar, Vijay
AU - Greenwell, Tamsin
AU - Watkin, Nick
AU - Bujons Tur, Anna
AU - Lozano Ortega, Jose
AU - Pérez-Valderrama, Maria Begoña
AU - Gutierrez Baños, Jose
AU - Garcia Aparicio, Luis
AU - Lopez, Manuel
AU - Romero Otero, Javier
AU - Lopez Pereira, Pedro
AU - Herranz Amo, Felipe
AU - Oswald, Josef
AU - Abols, Valts
AU - Frobe, Ana
AU - Judit Molnar, Maria
AU - Goergen, Martine
AU - Dalmas, Miriam
AU - Lovrecic, Luca
AU - Feitz, Wout F.J.
PY - 2021
Y1 - 2021
N2 - 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. For patients with a rare or complex urological anomaly and their care takers, ERN eUROGEN aims to improve knowledge exchange and expertise sharing, to optimise care pathways and innovate cure potential for all rare urorectogenital diseases and complex conditions in the European Union. The data show that ERN eUROGEN's healthcare providers and expert multidisciplinary teams are treating an increasing number of patients and performing an increasing number of complex surgical procedures.
AB - 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. For patients with a rare or complex urological anomaly and their care takers, ERN eUROGEN aims to improve knowledge exchange and expertise sharing, to optimise care pathways and innovate cure potential for all rare urorectogenital diseases and complex conditions in the European Union. The data show that ERN eUROGEN's healthcare providers and expert multidisciplinary teams are treating an increasing number of patients and performing an increasing number of complex surgical procedures.
KW - Collaboration
KW - Complex conditions
KW - European Reference Network
KW - Rare
KW - Rare diseases
KW - Urology
KW - eUROGEN
KW - Collaboration
KW - Complex conditions
KW - European Reference Network
KW - Rare
KW - Rare diseases
KW - Urology
KW - eUROGEN
UR - http://hdl.handle.net/10807/183997
U2 - 10.1016/j.eururo.2021.02.043
DO - 10.1016/j.eururo.2021.02.043
M3 - Article
SP - N/A-N/A
JO - European Urology
JF - European Urology
SN - 0302-2838
ER -