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Session 3 christina_rusu

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  • 1. Centres of Expertise – Actual Situation and Plan Development in Romania Cristina Rusu , Mihaela Bardos, I. V. Pop, Maria Puiu, Cristina Vladu, V. Gorduza, Cristina Skrypnyk, D. Moldovan, Dorica Dan National Council for Rare Disorders, Romania Romanian Health Ministry
  • 2. Actual situation in Romania
    • (+) 7 Medical Genetics Centers (clinical setting, cytogenetics lab, DNA lab);
    • (+/ -) Neonatal screening;
    • (+) Connection with European networks (Orphanet, Dyscerne);
    • (-) Limited connection between centers,
    • (-) No prevalence data;
    • (+/ -) No national registry;
  • 3.  
  • 4. National Plan for Rare Disorders National network of expertise centers
    • 2008 – partnership Health Ministry – National Alliance for Rare Disorders;
    • National Council for Rare Disorders (professionals, patients’ organizations) -> National Plan for Rare Disorders;
    • Network of expertise centers :
      • Referrence centers (1/ country);
      • Competence centers (1/ region);
      • Basic medical centers (1/ county);
  • 5. REFERRENCE CENTERS - atributions
    • management of the national register;
    • diagnosis, specialized investigations, therapy initiation and elaborate patient management directions;
    • monitor patients;
    • correlate research;
    • guidelines;
    • management of health programmes;
    • regularly inform stakeholders;
    • cooperate with the European network of centres;
    • train professionals and patients.
  • 6. COMPETENCE CENTERS - atributions
    • apply guidelines;
    • monitor and transmit information to reference centres/ basic medical centres;
    • organize screening;
    • database with professionals;
    • prevention, diagnosis, therapy, recovery.
  • 7. BASIC MEDICAL CENTERS - atributions
    • implement screening;
    • solve simple cases, refer complex cases;
    • inform and training (physicians from other specialties, patients etc);
    • maintain connections with patient’s associations.
  • 8. Thank you !

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