Other activities

Rare and complex urogenital conditions can require surgical correction, often during the neonatal period or in childhood. Individuals affected require life-long care pro­vided by multidisciplinary teams of experts who plan and perform surgery, and provide post-operative physiotherapy and psychol­ogy support. eUROGEN will provide independently-eval­uated best practice guidelines and improve the sharing of outcomes. It will, for the first time, offer the capacity for tracking long-term outcomes for patients over a 15 to 20-year period.

The network will collect data and materials where they are lacking, develop new guide­lines, build evidence of best practice, iden­tify practice variation, develop education programmes and training, set the research agenda in collaboration with patient repre­sentatives, and share knowledge through par­ticipation in virtual multidisciplinary teams. By 2020, at least 50 new specialists for rare and complex urogenital diseases will have benefited from specific training and fellow­ship programmes developed by eUROGEN. Ultimately, the network seeks to advance innovation in medicine and improve diagnos­tics and treatment for patients.

Scope of the ERNs

To create equitable access for as many patients as possible in an efficient and cost-effective way we have divided our activities into four categories: