Aim

The ERN eUROGEN registry is currently being implemented at the participating Healthcare Providers (HCPs) of ERN eUROGEN. 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.

The ERN eUROGEN registry has several objectives:

The ERN eUROGEN registry will enable the identification of contemporary cohorts of patients with rare uro-recto-genital diseases for clinical research such as studies of diagnostic tools and prognostic biomarkers as well as interventional trials evaluating novel drugs and treatment protocols.
The ERN eUROGEN registry will enable monitoring of diagnostic and treatment procedures at the healthcare providers (HCPs) which is very important because for most rare uro-recto-genital diseases and complex conditions no clear guidelines on these procedures are available.
Finally, the ERN eUROGEN registry will enable research into the diagnosis, treatment and outcome or prognosis of rare uro-recto-genital diseases. It will help us to gain knowledge about the course of the diseases and the effect of different treatments.

The final ERN eUROGEN registry for all 114 rare uro-recto-genital 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.