Centres of Expertise –  Actual Situation and Plan Development in Romania Cristina Rusu , Mihaela Bardos, I. V. Pop, Maria ...
Actual situation in Romania <ul><li>(+)  7 Medical Genetics Centers (clinical setting, cytogenetics lab, DNA lab); </li></...
 
National Plan for Rare Disorders National network of expertise centers <ul><li>2008 –  partnership  Health Ministry – Nati...
REFERRENCE  CENTERS   -  atributions <ul><li>management of the national register;  </li></ul><ul><li>diagnosis, specialize...
COMPETENCE  CENTERS   -  atributions <ul><li>apply guidelines; </li></ul><ul><li>monitor and transmit information to refer...
BASIC  MEDICAL  CENTERS  - atributions <ul><li>implement screening;  </li></ul><ul><li>solve simple cases, refer complex c...
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Session 3 christina_rusu

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Session 3 christina_rusu

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