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:

Development of clinical guidelines for rare and complex urogenital diseases

There is currently a lack of evidenced based, unbiased information on the different urogenital rare diseases. For healthcare professionals, eUROGEN will replicate and standardize best practice methodology, which will lead to improvements in the quality and effectiveness of care. eUROGEN aims to translate the clinical guidelines into information for patients in a clear and understandable way.

Research & innovation

Knowledge sharing across the WS will foster innovation and allow new treatments or surgical techniques to be tested and made available to patients where there are gaps in current effective diagnosis or treatments. Together with patients eUROGEN will develop new research programmes to stimulate new studies.

Generating & sharing evidence

Evidence and data is lacking for many rare conditions. Collecting information about rare and complex urogenital diseases in a harmonised and comparable way will lead to better clinical care and research outcomes. The eUROGEN centres of excellence will collaborate in European virtual Multi-Disciplinary Teams (MDT) for quicker diagnosis and the best treatment for patients all over Europe.

Training & e-learning

eUROGEN will offer highly specialised surgical training. A collection of case reports, surgical and urogenital procedures, and outcome perspectives will build knowledge. European virtual MDT video-consultation discussions and reporting will offer a whole new perspective to train experts via virtual MDT participation. Each work stream will have a dedicated Educational Lead who will form the educational programme on a yearly basis.