Table of Contents

Part I: Introductory chapters

1. Introduction: Rare urology, ERN eUROGEN and knowledge exchange

2. The European Association of Urology (EAU) and ERN eUROGEN

Part II: Overview chapters

3. ERN eUROGEN: Impact and innovations for rare and complex urology

4. The patient view on the ERN programme: Share, care, cure, and pathways

5. Cross-ERN actions and collaborations by ERN eUROGEN

6. Development of the ERN eUROGEN registry

7. Development of ERN eUROGEN clinical practice guidelines (CPGs) and clinical decision support tools (CDSTs)

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

9. Expertise Area 1.2: Bladder exstrophy/epispadias

10. Expertise Area 1.3: Rare urological stones and kidney diseases

11. Expertise Area 1.4: Nonsyndromic urogenital tract malformation (neurogenic bladder and spina
bifida)

12. Expertise Area 1.5: Posterior urethral valves

13. Expertise Area 1.6: Proximal hypospadias

14. Expertise Area 1.7: Ano-uro-rectal malformations

Section B
Workstream 2: Functional urogenital conditions requiring highly specialised surgery

15. Expertise Area 2.1: Complicated and complex pelvic floor disorders

16. Expertise Area 2.2: Rare diseases and conditions affecting the female urethra

17. Expertise Area 2.3: Urethral reconstruction in rare diseases and conditions

18. Expertise Area 2.4: Rare retroperitoneal diseases and conditions

19. Expertise Area 2.5: Bladder pain syndrome/Interstitial cystitis (BPS/IC)

20. Expertise Area 2.6: Adult urogenital reconstructive surgery

21. Expertise Area 2.7: Surgery for transgender patients

Section C
Workstream 3: Rare Urogenital Tumours

22. Expertise Area 3.1: Penile cancer

23. Expertise Area 3.2: Testicular cancer

24. Expertise Area 3.3: Adrenal cancer

25. Expertise Area 3.4: Abdominopelvic sarcoma

26. Expertise Area 3.5: Rare renal tumour surgery

About the Author

Jen Tidman is an experienced executive administrator, communications expert, and project manager with a demonstrated history of working in healthcare and publishing. She has studied at the University of Sheffield (BA Journalism Studies), Robert Gordon University (PGCert Publishing Studies), and The Open University (BSc Psychology) and has worked in the field of urology since 2004. From 2006-2015 she was the Managing Editor of the medical journal Neurourology & Urodynamics. She provided editorial support for the book “Urogenital Infections” published in 2010 by the European Association of Urology (EAU) and the International Consultation on Urological Diseases (ICUD). She worked on the initial application to form ERN eUROGEN, and following its official launch in 2017, she was appointed as the network’s Business Support Manager. Her responsibilities include project management, administration, and communication and dissemination.

Prof. dr. W.F.J. Feitz studied Medicine in Nijmegen. He specialized in Urology (Fellow of the European Board of Urology) and specialized further in the field of Pediatric Urology (Fellow of the European Academy of Paediatric Urology). In 1993, he was appointed as Pediatric Urologist at the Department of Urology of the Radboud University Nijmegen Medical Centre. In 2001 he became associate professor and on 1 November 2006 full professor in Pediatric Urology at the Radboud University Nijmegen. The Pediatric Urology research program concerns congenital anomalies of the Urinary Tract and involves multidisciplinary collaborations within the research programs of the RUNMC and NCMLS and national and international collaborations. It involves the epidemiological and genetic aspects of congenital Urinary Tract Anomalies and Regenerative Urology and Tissue Engineering. He is currently the coordinator of the EU program EuroSTEC Soft tissue engineering for congenital birth defects (www.EuroSTEC.eu), advisor for the EU MultiTERM program (www.multitermproject.eu) and Program director of the training program for Pediatric Urology for the European Paediatric Urology Fellowship Program of The Joint Committee of Paediatric Urology (JCPU) of the EUMS, RUNMC (www.espu.org). He is the mentor of different student programs and an EUSP program for Pediatric Urology research in the field of tissue engineering.