Aim

The ERN eUROGEN registry is currently being developed. The aim of this registry is to collect 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.

ERN eUROGEN will launch a core registry containing the 16 Joint Research Centre (JRC) core elements plus several urogenital specific data elements. Together, they will form the pilot phase of the registry where physicians from all 43 Health Care Providers (HCPs) will be asked to register their last 30 rare cases in an anonymous way. This pilot phase will allow users to understand how to use 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.

In addition, we will start to integrate four existing rare urogenital disease-specific registries into the ERN 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 ERN eUROGEN registry.

The final eUROGEN registry for all 114 rare urogenital diseases will benefit patients and their families who go through a diagnosis odyssey, physicians who will learn about rare and complex conditions and get new insights into the best treatment options, and scientists who are looking for patient cohorts for future research and clinical trials.