Urology / Projects

3rd Health Programme (2014-2020)
Proposal for a direct grant to support the coordiantion and related activities of the network [ERN eUROGEN]
The ERN for rare and complex urogenital diseases and conditions ERN eUROGEN will deliver quicker specialist evaluation and more equitable access to high quality diagnosis, treatment and care for patie...
The ERN for rare and complex urogenital diseases and conditions ERN eUROGEN will deliver quicker specialist evaluation and more equitable access to high quality diagnosis, treatment and care for patients with rare urogenital diseases and complex conditions who need highly specialised assessment and surgery. We will train the next generation of surgeons to increase skill levels and improve outcomes. A priority will be transferring knowledge and training to the Member States with less expertise, thereby increasing the quality of surgical outcomes across Europe. Educational and research strategies will be developed together with patients and patient representatives involved in the relevant disease areas.

ERN eUROGEN comprises 3 workstreams (WS). Focusing on clinical and surgical excellence, we will ensure continuity of care from childhood throughout the lifespan of the patient encompassing the important and often neglected adolescent period of urogenital practice:
WS1 - rare congenital uro-recto-genital anomalies
WS2 - functional urogenital conditions requiring highly specialised surgery
WS3 - rare urogenital tumours

ERN eUROGEN will create faster and more equitable access to high quality diagnosis and treatment advice, guideline development and sharing of best practice care for patients with rare urogenital diseases and complex conditions who need highly specialised surgery. We have 3 broad workstreams to ensure that as many of our patients as possible can receive high quality specialist care from birth through to the end of life. Patients have reported a lack of adequate care when transitioning from paediatric to adult urogenital care. Processes will be put into place to transfer the care of these patients from paediatric to adult specialists and European virtual Multi-disciplinary Teams including the healthcare providers with expertise in the area will be used for case discussions and recommendations for treatment and ongoing care.
Start date: 01/06/2018 - End date: 31/05/2021

Call: Direct Grants
Topic: Urology
3rd Health Programme (2014-2020)
ERN eUROGEN Registry for rare urogenital diseases [ERN-eUROGEN registry]
The ERN eUROGEN, currently consisting of 43 HCPs from 17 EU Members States, aims to set up a large patient registry collecting individual data from patients suffering from rare urogenital diseases or ...
The ERN eUROGEN, currently consisting of 43 HCPs from 17 EU Members States, aims to set up a large patient registry collecting individual data from patients suffering from rare urogenital diseases or complex conditions. Currently, very limited data is being gathered about disease progression, surgical procedures and treatment outcome, and the few existing databases are not standardized, fragmenting and scattering the information. Moreover, there is a lack of long-term follow up of the treatment outcome into adolescence and adulthood, which hinders improvement of treatments over time.

Here, ERN eUROGEN will launch the core registry containing the 16 JRC core elements plus several urogenital specific data elements. Together, they will conform the pilot phase of the registry where physicians from all 43 HCPs will register their last 30 rare cases in an anonymous way. The pilot phase will allow to get used to the registry and to perform a clinical snapshot of the current practices i.e. to compare the clinical management of these cases among the expert centres across Europe.

Besides, we will start to integrate four existing rare urogenital disease-specific registries into eUROGEN registry by assessing interoperability and data elements to be imported. We will also prepare the next expansion phase of the registry by collecting the informed consent forms of patients, incorporating suggestions of the users from the pilot phase and enlarging the data set of the eUROGEN registry. Thus, the main outputs will be the operational registry, its governance and the expansion plan, the synchronization protocol, the practice variation study and patient cohorts for future research and clinical trials.

The eUROGEN registry for all 114 rare urogenital diseases will benefit patients and their families who go through a diagnosis odyssey, and the physicians who will learn about seldom conditions and get new insights into the best treatment options, impossible on a national scale.
Start date: 01/06/2020 - End date: 31/05/2023

Call: Call for Proposals for Projects 2019
Topic: Urology