On Rare Disease Day 2024, ERN eUROGEN, the European Reference Network (ERN) for rare uro-recto-genital diseases and complex conditions, is thrilled to unveil its groundbreaking new book “Rare and Complex Urology” and gives thanks to all who contributed.
This essential publication 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 and paediatric surgeons, as well as multidisciplinary team members seeking guidance on how to implement novel research.
The publication of “Rare and Complex Urology” marks a pivotal moment in the field of urology and the work of ERN eUROGEN, offering hope to individuals worldwide grappling with rare uro-recto-genital diseases and complex conditions.
Key Features
- Provides a foundation for many rare uro-recto-genital diseases and complex conditions with contributions from high-volume centres monitored by ERN eUROGEN
- Combines in-depth research findings with clinical information to supply state-of-the-art care solutions for rare and complex aspects of urology
- Removes the uncertainty of managing rare and complex uro-recto-genital cases and variations in practice
Introductory and Overview Chapters
Chapter 1 – Introduction: Rare urology, ERN eUROGEN and knowledge exchange
Wouter F.J. Feitz
Chapter 2 – The European Association of Urology (EAU) and ERN eUROGEN
Christopher R. Chapple
Chapter 3 – ERN eUROGEN: Impact and innovations for rare and complex urology
Wouter F.J. Feitz, Loes Oomen, Darren Shilhan, Michelle Battye, Jen Tidman
Chapter 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, Robert Cornes
Chapter 5 – Cross-ERN actions and collaborations by ERN eUROGEN
Michelle Battye, Matthew Bolz-Johnson, Jen Tidman
Chapter 6 – Development of the ERN eUROGEN registry
Loes F.M. van der Zanden, Isabel C. Hageman, Lotte Boormans, Loes Oomen, Wim P.J. Witjes
Chapter 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 José Vicente-Edo, Patricia Gavín Benavent
Clinical Chapters
Workstream 1: Rare Congenital Uro-Recto-Genital Anomalies
Chapter 8 – Complex genital reconstructions in patients with differences of sex development
Verena Ellerkamp, Katja P. Wolffenbuttel and Raimund Stein
Chapter 9 – Bladder exstrophy/epispadias
Gundela Holmdahl, Marc-David Leclair, Wolfgang H. Rösch, Alaa El-Ghoneimi
Chapter 10 – Rare urological stones and kidney diseases
Matthieu Peycelon, Annabel Paye-Jaouen, Delphine Demede, Valeska Bidault, Marie Andersson, Anne-Françoise Spinoit
Chapter 11 – Nonsyndromic urogenital tract malformation (neurogenic bladder and spina bifida)
Giovanni Mosiello, Rien Nijman, Christian Radmayr, Michaela Dellenmark-Blom, Sylvia Roozen, Jean Marie Jouannic, Raimund Stein, Kate Abrahamsson
Chapter 12 – Posterior urethral valves
Yazan F. Rawashdeh, Magdalena Fossum, Raimund Stein, Rafal Chrzan
Chapter 13 – Proximal hypospadias
Magdalena Fossum, Lisa Örtqvist, Yazan F. Rawashdeh, Alessandro Morlacco
Chapter 14 – Ano-uro-rectal malformations
Herjan J.J. van der Steeg, Paola Midrio, Eberhard Schmiedeke, Ivo de Blaauw
Workstream 2: Functional Uro-Recto-Genital Conditions Requiring Highly Specialised Surgery
Chapter 15 – 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, Margit Fisch
Chapter 16 – Rare diseases and conditions affecting the female urethra
José Medina-Polo, Malte W. Vetterlein, Jakob Klemm
Chapter 17 – Urethral reconstruction in rare diseases and complex 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, Gunter De Win
Chapter 18 – Rare retroperitoneal diseases and conditions
Maria Virginia Amesty, Susana Rivas, Fabrizio Dal Moro, Mariangela Mancini
Chapter 19 – Bladder pain syndrome/Interstitial cystitis (BPS/IC)
Mariangela Mancini, Dick Janssen, Alessandro Morlacco, Enrico Ammirati, Alessandro Giammo
Chapter 20 – Adult urogenital reconstructive surgery
Laetitia M.O. de Kort, Tim Brits, Sara Brucker, Pepijn Polm, Katharina Rall, Raimund Stein, Sahra Steinmacher, Kate Tyler, Nina Younsi
Chapter 21 – Surgery for transgender patients
Silke Riechardt, Timo Nieder, Katharina Grupp, Benjamin Meister
Workstream 3: Rare Uro-Recto-Genital Tumours
Chapter 22 – Penile cancer
Manon T.A. Vreeburg, Peter Kirrander, Marco Falcone, Maarten Albersen, Oscar R. Brouwer
Chapter 23 – Testicular cancer
Arnout Alberts, Tomas Buchler, Yue Che, Ana Fröbe, Marija Miletić, Tahlita Zuiverloon
Chapter 24 – Adrenal cancer
Johan Langenhuijsen, Marija Miletić, Mirsala Solak, Mario Dominguez Esteban, Mariangela Mancini, Daphne Hompes, Tomislav Kulis, Jörg Fuchs, Bastian Amend, Ana Fröbe
Chapter 25 – Abdominopelvic sarcoma
Mariangela Mancini
Chapter 26 – Rare renal tumour surgery
Matthieu Peycelon, Pascale Philippe-Chomette, Anne-Françoise Spinoit, Marie Andersson
