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Pregled bibliografske jedinice broj: 1159774

Rare and Complex Urology: Clinical Overview of ERN eUROGEN

Oomena, Loes; Leijtea, Erik; Shilhanb, Darren E.; Battyeb, Michelle; Members of ERN eUROGEN: Waltregny, David; Van der Aa, Frank; Spinoit, Anne- Francoise; Rosch, Wolfgang H.; Schmiedeke, Eberhard; Fisch, Margit et al.
Rare and Complex Urology: Clinical Overview of ERN eUROGEN // European Urology, 81 (2021), 2; 204-212 doi:10.1016/j.eururo.2021.02.043 (međunarodna recenzija, članak, ostalo)

CROSBI ID: 1159774 Za ispravke kontaktirajte CROSBI podršku putem web obrasca

Naslov
Rare and Complex Urology: Clinical Overview of ERN eUROGEN

Autori
Oomena, Loes ; Leijtea, Erik ; Shilhanb, Darren E. ; Battyeb, Michelle ; Members of ERN eUROGEN: Waltregny, David ; Van der Aa, Frank ; Spinoit, Anne- Francoise ; Rosch, Wolfgang H. ; Schmiedeke, Eberhard ; Fisch, Margit ; Marzheuser, Stefanie ; Gosemann, Jan-Hendrik ; Hubertus, Jochen ; Rawashdeh, Yazan ; Thorup, Jorgen ; Heloury, Yves ; Leva, Ernesto ; Mancini, Mariangela ; Bagolan, Pietro ; Sacco, Emilio ; Verkauskas, Gilvydas ; Feitz, Wout ; Sloots, Cornelius ; Czauderna, Piotr ; Mauricio, Maria ; Holmdahl, Gundela ; Abrahamsson, Kate ; Thomas, Kay ; Cardozo, Linda ; Chapple, Christopher ; Sangar, Vijay ; Greenwell, Tamsin ; Watkin, Nick ; Bujons Tur, Anna ; Lozano Ortega, Jose ; Begon ̃a Pe ́rez-Valderrama, Maria ; Gutierrez Ban ̃os, Jose ; Garcia Aparicio, Luis ; Lopez, Manuel ; Romero Otero, Javier ; Lopez Pereira, Pedro ; Herranz Amo, Felipe ; Oswald, Josef ; Abols, Valts ; Frobe, Ana ; Molnar, Maria Judit ; Goergen, Martine ; Dalmas, Miriam ; Lovrecic, Luca ; Feitza, Wout F.J.

Izvornik
European Urology (0302-2838) 81 (2021), 2; 204-212

Vrsta, podvrsta i kategorija rada
Radovi u časopisima, članak, ostalo

Ključne riječi
Collaboration ; Complex conditions ; European Reference Network ; Rare ; Rare diseases ; Urology ; eUROGEN.

Sažetak
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.

Izvorni jezik
Engleski

Znanstvena područja
Kliničke medicinske znanosti, Biotehnologija u biomedicini (prirodno područje, biomedicina i zdravstvo, biotehničko područje)



POVEZANOST RADA

Ustanove:
Stomatološki fakultet, Zagreb,
KBC "Sestre Milosrdnice"

Profili:

Avatar Url Ana Fröbe (autor)

Poveznice na cjeloviti tekst rada:

doi

Citiraj ovu publikaciju:

Oomena, Loes; Leijtea, Erik; Shilhanb, Darren E.; Battyeb, Michelle; Members of ERN eUROGEN: Waltregny, David; Van der Aa, Frank; Spinoit, Anne- Francoise; Rosch, Wolfgang H.; Schmiedeke, Eberhard; Fisch, Margit et al.
Rare and Complex Urology: Clinical Overview of ERN eUROGEN // European Urology, 81 (2021), 2; 204-212 doi:10.1016/j.eururo.2021.02.043 (međunarodna recenzija, članak, ostalo)
Oomena, L., Leijtea, E., Shilhanb, D., Battyeb, M., Members of ERN eUROGEN: Waltregny, D., Van der Aa, F., Spinoit, A., Rosch, W., Schmiedeke, E. & Fisch, M. (2021) Rare and Complex Urology: Clinical Overview of ERN eUROGEN. European Urology, 81 (2), 204-212 doi:10.1016/j.eururo.2021.02.043.
@article{article, author = {Oomena, Loes and Leijtea, Erik and Shilhanb, Darren E. and Battyeb, Michelle and Members of ERN eUROGEN: Waltregny, David and Van der Aa, Frank and Spinoit, Anne- Francoise and Rosch, Wolfgang H. and Schmiedeke, Eberhard and Fisch, Margit and Marzheuser, Stefanie and Gosemann, Jan-Hendrik and Hubertus, Jochen and Rawashdeh, Yazan and Thorup, Jorgen and Heloury, Yves and Leva, Ernesto and Mancini, Mariangela and Bagolan, Pietro and Sacco, Emilio and Verkauskas, Gilvydas and Feitz, Wout and Sloots, Cornelius and Czauderna, Piotr and Mauricio, Maria and Holmdahl, Gundela and Abrahamsson, Kate and Thomas, Kay and Cardozo, Linda and Chapple, Christopher and Sangar, Vijay and Greenwell, Tamsin and Watkin, Nick and Bujons Tur, Anna and Lozano Ortega, Jose and Begon \~a Pe \'rez-Valderrama, Maria and Gutierrez Ban \~os, Jose and Garcia Aparicio, Luis and Lopez, Manuel and Romero Otero, Javier and Lopez Pereira, Pedro and Herranz Amo, Felipe and Oswald, Josef and Abols, Valts and Frobe, Ana and Molnar, Maria Judit and Goergen, Martine and Dalmas, Miriam and Lovrecic, Luca and Feitza, Wout F.J.}, year = {2021}, pages = {204-212}, DOI = {10.1016/j.eururo.2021.02.043}, keywords = {Collaboration, Complex conditions, European Reference Network, Rare, Rare diseases, Urology, eUROGEN.}, journal = {European Urology}, doi = {10.1016/j.eururo.2021.02.043}, volume = {81}, number = {2}, issn = {0302-2838}, title = {Rare and Complex Urology: Clinical Overview of ERN eUROGEN}, keyword = {Collaboration, Complex conditions, European Reference Network, Rare, Rare diseases, Urology, eUROGEN.} }
@article{article, author = {Oomena, Loes and Leijtea, Erik and Shilhanb, Darren E. and Battyeb, Michelle and Members of ERN eUROGEN: Waltregny, David and Van der Aa, Frank and Spinoit, Anne- Francoise and Rosch, Wolfgang H. and Schmiedeke, Eberhard and Fisch, Margit and Marzheuser, Stefanie and Gosemann, Jan-Hendrik and Hubertus, Jochen and Rawashdeh, Yazan and Thorup, Jorgen and Heloury, Yves and Leva, Ernesto and Mancini, Mariangela and Bagolan, Pietro and Sacco, Emilio and Verkauskas, Gilvydas and Feitz, Wout and Sloots, Cornelius and Czauderna, Piotr and Mauricio, Maria and Holmdahl, Gundela and Abrahamsson, Kate and Thomas, Kay and Cardozo, Linda and Chapple, Christopher and Sangar, Vijay and Greenwell, Tamsin and Watkin, Nick and Bujons Tur, Anna and Lozano Ortega, Jose and Begon \~a Pe \'rez-Valderrama, Maria and Gutierrez Ban \~os, Jose and Garcia Aparicio, Luis and Lopez, Manuel and Romero Otero, Javier and Lopez Pereira, Pedro and Herranz Amo, Felipe and Oswald, Josef and Abols, Valts and Frobe, Ana and Molnar, Maria Judit and Goergen, Martine and Dalmas, Miriam and Lovrecic, Luca and Feitza, Wout F.J.}, year = {2021}, pages = {204-212}, DOI = {10.1016/j.eururo.2021.02.043}, keywords = {Collaboration, Complex conditions, European Reference Network, Rare, Rare diseases, Urology, eUROGEN.}, journal = {European Urology}, doi = {10.1016/j.eururo.2021.02.043}, volume = {81}, number = {2}, issn = {0302-2838}, title = {Rare and Complex Urology: Clinical Overview of ERN eUROGEN}, keyword = {Collaboration, Complex conditions, European Reference Network, Rare, Rare diseases, Urology, eUROGEN.} }

Časopis indeksira:


  • Current Contents Connect (CCC)
  • Web of Science Core Collection (WoSCC)
    • Science Citation Index Expanded (SCI-EXP)
    • SCI-EXP, SSCI i/ili A&HCI
  • Scopus
  • MEDLINE

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