• WP6. National care pathways and ERN referral systems

WP6. National care pathways and ERN referral systems

  • Leader: Vilnius University Hospital Santaros Klinikos (VULSK), Vilnius – Lithuania, Health Service Executive (HSE) - Ireland, Medical University of Vienna (MUW)

The WP objectives are i) to develop recommendations for the organisation of rare and complex diseases interfacing with ERNs. This includes the recognition of and compliance with ERN evidence-based resources such as Clinical Practice Guidelines, ii) to develop a proposal for referral systems to ERNs and iii) to develop guidelines for the incorporation of CPMS advice into patients’ care.

National care pathways and ERN referral systems

Objectives

  1. Task 1: Develop of a sign-posting tool for national expertise and multidisciplinary team access, with links to ERNs (Lead: HSE)
  2. Task 2: Develop model (reference) care pathways for RDs or groups of RDs (Lead: HSE)
  3. Task 3: Identify BEAMs (barriers/enablers/accelerators/motivators) for the implementation of care pathways (Lead: VULSK)
  4. Task 4: Develop recommendations and guidelines for the implementation of care pathways (Lead: VULSK)
  5. Task 5: Pilot implementation of care pathways into national systems (Lead: VULSK)
  6. Task 6: Develop recommendations for early emergency responses to the needs of people living with a RD (Lead: MUW)
  7. Task 7: Establish a RD Hub in Ukraine that provides national support with links to ERNs (Lead: MUW)
  8. Deliverable 1: A sign-posting tool of national experitse, linking to ERNs and that identifies pathways for conditions not covered by the country’s exprtise or included in an ERN
  9. Deliverable 2: A compendium/blueprint of model of care pathways for RDs for groups of RDs
  10. Deliverable 3: Recommendations for the organisation for rare and complex diseases interfacing with ERNs, for referral systems to ERNs and the incorporation of CPMS advice for rare and complex diseases
  11. Deliverable 4: Toolkit of best practices for the implementation of care pathways
  12. Deliverable 5: Report the includes recommendations for early emergency response and the integration of RD Hub in Ukraine into the ERN system

Other WPs

  • WP5 National governance and quality assurance models

    National governance and quality assurance models

    • Rizzoli Orthopaedic Institute (IOR), Bologna – Italy, Medical University of Vienna (MUW), University Hospital of Pisa (AOUP)
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  • 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)
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  • WP8 Data management

    Data management

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

    National support options for ERN-HCP

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