• WP8. Data management

WP8. Data management

  • Leader: Ministry of Health and Prevention (DGOS), France, Medical University of Leiden (LUMC), Netherlands

Its objective is to develop recommendations ensuring the interoperability of data structures on member state level (local, regional, national) and ERN level.

Data management

Objectives

  1. Task 1: Identify current barriers to RD data sharing and inventory of existing solutions (led by University of Heidelberg, Germany)
  2. Task 2: Implement solutions to improve semantic accuracy and interoperability of RD health data (led by INSERM, France)
  3. Task 3: Propose and develop implementable solutions to overcome organizational, technical and legal barriers to integration of national health systems and ERN data management (led by Medical University of Leiden, Netherlands)
  4. Task 4: Test and implement solutions in agile mode (led by BNDMR, France)
  5. Task 5: Visualize RD Expert centres with ERN & NRN (led by University of Frankfurt, Germany)
  6. Deliverable 1: Implementable solutions mapping
  7. Deliverable 2: SE Atlas V1 release
  8. Deliverable 3: Recommendations for organization of care pathways and referral systems to ERN
  9. Deliverable 4: Report on barriers to RD data sharing and existing solutions
  10. Deliverable 5: Recommendations for integration of data management between national health systems and ERN

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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  • 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)
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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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  • 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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