The stakeholders of the ERN eUROGEN Registry are the groups in society who will be positively affected by the eUROGEN’s Registry outcome. These are:

  1. Patients, their families and patient organisations in the field of rare urogenital diseases:
    Patients will be the primary target group of the registry, which aims to improve their medical care by stringent performance and outcome monitoring, generate highly relevant prognostic information, and facilitate their access to clinical trials on novel medications and technologies. The registry will include both children and adults, which will offer a unique opportunity to analyse the lifelong evolution of these rare diseases and complex conditions.
  2. Healthcare providers (HCPs) in the field of rare urogenital diseases and complex conditions:
    The registry will have a significant added value for all physicians involved in this field with very few cases to create high quality standards and EU guidelines. But at the same time, the registry can represent a burden due to the time demanded for getting used to the platform and filling in the data set. Importantly, without the collaboration of the HCPs in the network, this registry will not succeed. Therefore, they are probably the most important target group.
  3. Public health authorities and policy makers:
    The registry will be highly valuable to healthcare administrators on the local, regional, national and EU levels as it will generate novel information on disease epidemiology, management quality and health outcomes that can be used for cost efficiency analyses.
  4. Researchers in the scientific community and Industry:
    The registry will be very useful for pharmaceutical industry and independent academic researchers in need of information on specific disease populations potentially suitable for involvement in clinical trials, epidemiological studies and translational research.

Stakeholders