Workstream 1 - ERN eUROGEN

Workstream 1: Rare congenital uro-recto-genital anomalies

Workstream 1 (WS1) focuses on rare congenital uro-recto-genital anomalies. The Expertise Areas (EAs) covered by Workstream 1 are:

These EAs require specific diagnoses and surgical correction, often in both acute and staged approaches in neonatal or childhood stages. Expertise is crucial to prevent costly and harmful secondary surgeries. Multi-disciplinary teams (MDTs) offer life-long care, enhancing post-operative well-being. ERN eUROGEN bridges paediatric and adult care gaps, enhancing outcomes through crossover and workstream transfer from WS1 to WS2. Improved transition ensures lifelong positive outcomes and disease self-management, ensuring continuous care across life stages.

Leads

Workstream Lead: Giovanni Mosiello

Clinical Lead: Andrzej Gołębiewski

Education Lead: Jorgen Thorup

Prof. Jorgen Thorup is Head of the Department of Paediatric Surgery at Rigshospital, University Hospital of Copenhagen and Professor and Chair of Pediatric Surgery at the Faculty of Health and Medical Sciences, University of Copenhagen, where he is a clinical lecturer for postgraduate courses in paediatric surgical subjects and has been a supervisor of 22 students and 5 postgraduate theses. He is a Fellow of the European Board of Pediatric Surgery (FEBPS) and a Fellow of the European Academy of Pediatric Urology (FEAPU).

For his PhD thesis, he developed a urodynamic assessment method for selecting children with congenital neurogenic bladder to individualized treatment modalities. As a medical consultant for Contura A/S, in cooperation with the engineer of the firm, he developed a syringe and needle for endoscopic subureteric injection treatment of vesicoureteric reflux. Based on his group’s research on germ cell development in cryptorchid testes, the consensus regarding surgical treatment within the first year of life was adapted in the National and Nordic Guidelines in 2007 and the US and European guidelines in 2014.

Research Lead: Magdalena Fossum

General Resources

EAU Paediatric Urology Guidelines. The European Association of Urology (EAU) Paediatric Urology Guidelines Panel has prepared these guidelines with the aim of increasing the quality of care for children with urological conditions.
EAU Congenital Malformation in the Urinary Tract Patient Information. The European Association of Urology (EAU) Patient Office provides reliable patient information on urology conditions and urology health.
ESPU Parent and Patient Information System. An online e-book containing information on the most common genitourinary disorders in children.