• WP5. National governance and quality assurance models

WP5. National governance and quality assurance models

  • Leader: Rizzoli Orthopaedic Institute (IOR), Bologna – Italy, Medical University of Vienna (MUW), University Hospital of Pisa (AOUP)

This work package is developing frameworks for national rare disease governance and quality assurance.

National governance and quality assurance models

Objectives

  1. To develop proposals for national governance models and practices for rare and complex disease HCPs and care pathways, fully interoperable with ERNs.
  2. To develop a proposal for national quality assurance models for rare and complex diseases.

Other WPs

  • WP6 National care pathways and ERN referral systems

    National care pathways and ERN referral systems

    • Vilnius University Hospital Santaros Klinikos (VULSK), Vilnius – Lithuania, Health Service Executive (HSE) - Ireland, Medical University of Vienna (MUW)
    Know more
  • WP7 National reference networks (NRN) and undiagnosed disease programmes or equivalent strategies interlinked with ERN

    National reference networks (NRN) and undiagnosed disease programmes or equivalent strategies interlinked with ERN

    • University Hospital Tübingen (UKT), Tübingen – Germany, Medical University of Vienna (MUW)
    Know more
  • WP8 Data management

    Data management

    • Ministry of Health and Prevention (DGOS), France, Medical University of Leiden (LUMC), Netherlands
    Know more
  • WP9 National support options for ERN-HCP

    National support options for ERN-HCP

    • General University Hospital in Prague (GUH), Czech Republic
    Know more