Registry & Digital Activities

Other Digital Activities

Patient Registry

We are actively working to set up the ERN eUROGEN patient registry. You can find further information via the links below:

  1. Aim
  2. Implementation
  3. Datasets
  4. Stakeholders
  5. Projects Granted Access
  6. Research Results
  7. Communication Strategy
  8. Project Management
  9. GDPR Responsibilities

Clinical Practice Guidelines and Clinical Decision Support Tools

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

We have established the ERN eUROGEN Guidelines Expert Panel – an overarching group formed of representatives from our full member healthcare providers, affiliated partners, European Patient Advocacy Group, and supporting partners.  This panel will commission guideline subgroups and oversee guideline development.

With guidance from the Spanish consortium appointed by the European Commission to facilitate the guidelines, and the agency assigned to us by the consortium, we have begun work on two guidelines:

You can download our factsheet on guidelines and the ERN Guidelines Methodological Handbooks. EURORDIS has also produced an ePAG guide to “Patient Involvement in Clinical Practice Guidelines and Other Clinical Decision Support Tools“.