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Rare and Complex Urology has been produced by the European Reference Network (ERN) for rare urogenital diseases and complex conditions, ERN eUROGEN.
The book combines information on network developments and clinical and surgical aspects, allowing for better diagnoses, treatments, and patient outcomes.
The expertise areas covered include those relating to the bladder, stone and kidney diseases, congenital malformations, pelvic floor disorders, the urethra, reconstruction, and rare cancers and tumours.
This is a must-have reference for clinicians and basic scientists interested in translational urology and surgery, including urologists, paediatric surgeons, and multidisciplinary team members seeking guidance on how to implement novel research.
Part I: Introductory chapters
1. Introduction: Rare urology, ERN eUROGEN and knowledge exchange
Wouter F.J. Feitz
2. The European Association of Urology (EAU) and ERN eUROGEN
Christopher R. Chapple
Part II: Overview chapters
3. ERN eUROGEN: Impact and innovations for rare and complex urology
Wouter F.J. Feitz, Loes Oomen, Darren Shilhan, Michelle Battye, and Jen Tidman
4. The patient view on the ERN programme: Share, care, cure, and pathways
Dalia Aminoff, Rita Serena Bartezzati, Nicole Schwarzer, Claire Harkin, Kate Tyler, Anna De Santis, John Osborne, Kenneth Manzie, and Robert Cornes
5. Cross-ERN actions and collaborations by ERN eUROGEN
Michelle Battye, Matthew Bolz-Johnson, and Jen Tidman
6. Development of the ERN eUROGEN registry
Loes F.M. van der Zanden, Isabel C. Hageman, Lotte Boormans, Loes Oomen, and Wim P.J. Witjes
7. Development of ERN eUROGEN clinical practice guidelines (CPGs) and clinical decision support tools (CDSTs)
Jen Tidman, Wouter F.J. Feitz, Ramnath Subramaniam, Dalia Aminoff, Juan Antonio Blasco-Amaro, Beatriz Carmona-Hidalgo, Lourdes González-Bermúdez, Carmen Martín-Gómez, Elena Stallings, María Jose Vicente-Edo, and Patricia Gavín Benavent
Part III: Clinical chapters
Section A
Workstream 1: Rare congenital uro-recto-genital anomalies
8. Expertise Area 1.1: Complex genital reconstructions in patients with differences of sex development
Verena Ellerkamp, Katja P. Wolffenbuttel, and Raimund Stein
9. Expertise Area 1.2: Bladder exstrophy/epispadias
Gundela Holmdahl, Marc-David Leclair, Wolfgang H. Rösch, and Alaa El-Ghoneimi
10. Expertise Area 1.3: Rare urological stones and kidney diseases
Matthieu Peycelon, Annabel Paye-Jaouen, Delphine Demede, Valeska Bidault, Marie Andersson, and Anne-Françoise Spinoit
11. Expertise Area 1.4: Nonsyndromic urogenital tract malformation (neurogenic bladder and spina
bifida)
Giovanni Mosiello, Rien Nijman, Christian Radmayr, Michaela Dellenmark-Bloom, Sylvia Roozen, Jean Marie Jouannic, Raimund Stein, and Kate Abrahamsson
12. Expertise Area 1.5: Posterior urethral valves
Yazan F. Rawashdeh, Magdalena Fossum, Raimund Stein, and Rafal Chrzan
13. Expertise Area 1.6: Proximal hypospadias
Magdalena Fossum, Lisa Örtqvist, Yazan F. Rawashdeh, and Alessandro Morlacco
14. Expertise Area 1.7: Ano-uro-rectal malformations
Herjan J.J. van der Steeg, Paola Midrio, Eberhard Schmiedeke, and Ivo de Blaauw
Section B
Workstream 2: Functional urogenital conditions requiring highly specialised surgery
15. Expertise Area 2.1: Complicated and complex pelvic floor disorders
John Heesakkers, Michel I.A. Wyndaele, Laetitia M.O. de Kort, Emilio Sacco, Riccardo Bientinesi, Dejan Filipas, Insa Fruehling, Tim Ludwig, and Margit Fisch
16. Expertise Area 2.2: Rare diseases and conditions affecting the female urethra
José Medina-Polo, Malte W. Vetterlein, and Jakob Klemm
17. Expertise Area 2.3: Urethral reconstruction in rare diseases and conditions
Malte W. Vetterlein, Michel I.A. Wyndaele, Felix Campos-Juanatey, Jakob Klemm, Laetitia M.O. de Kort, Margit Fisch, Petra de Graaf, Tim Brits, and Gunter De Win
18. Expertise Area 2.4: Rare retroperitoneal diseases and conditions
Maria Virginia Amesty, Susana Rivas, Fabrizio Dal Moro, and Mariangela Mancini
19. Expertise Area 2.5: Bladder pain syndrome/Interstitial cystitis (BPS/IC)
Mariangela Mancini, Dick Janssen, Alessandro Morlacco, Enrico Ammirati, and Alessandro Giammo
20. Expertise Area 2.6: Adult urogenital reconstructive surgery
Laetitia M.O. de Kort, Tim Brits, Sara Brucker, Pepijn Polm, Katharina Rall, Raimund Stein, Sahra Steinmacher, Kate Tyler, and Nina Younsi
21. Expertise Area 2.7: Surgery for transgender patients
Silke Riechardt, Timo Nieder, Katharina Grupp, and Benjamin Meister
Section C
Workstream 3: Rare Urogenital Tumours
22. Expertise Area 3.1: Penile cancer
Manon T.A. Vreeburg, Peter Kirrander, Marco Falcone, Maarten Albersen, and Oscar R. Brouwer
23. Expertise Area 3.2: Testicular cancer
Arnout Alberts, Tomas Buchler, Yue Che, Ana Fröbe, Marija Miletic, and Tahlita Zuiverloon
24. Expertise Area 3.3: Adrenal cancer
Johan Langenhuijsen, Marija Miletic, Mirsala Solak, Mario Dominguez Esteban, Mariangela Mancini, Daphne Hompes, Tomislav Kulis, Jörg Fuchs, Bastian Amend, and Ana Fröbe
25. Expertise Area 3.4: Abdominopelvic sarcoma
Mariangela Mancini
26. Expertise Area 3.5: Rare renal tumour surgery
Matthieu Peycelon, Pascale Philippe-Chomette, Anne-Françoise Spinoit, and Marie Andersson
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