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3. The Role of Solidarity(-ies) in Rare Diseases Research

5. The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers

10. ETHICAL MODELS UNDERPINNING RESPONSES TO THREATS TO PUBLIC HEALTH: A COMPARISON OF APPROACHES TO COMMUNICABLE DISEASE CONTROL IN EUROPE

11. A personalist approach to public-health ethics/Approche personnaliste de l'ethique en sante publique/Enfoque personalista de la etica en salud publica

16. The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia

17. Nonurgent patients in the emergency department? A French formula to prevent misuse

18. Meeting Patients' Right to the Correct Diagnosis : Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues

19. Recommendations for Improving the Quality of Rare Disease Registries

20. RD-Connect ID-Cards of biobanks and registries- making RD data FAIR.pptx

22. Recommendations for Improving the Quality of Rare Disease Registries

25. Poster Barcelona RECs

26. 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research.

27. Improving the informed consent process in international collaborative rare disease research : effective consent for effective research

28. The Italian National Centre for Rare Diseases: where research and public health translate into action

29. RD-Connect online catalogue of biobanks and registries: what do we add to the existing?

30. Informed consent in the RD-Connect platform: preparing guidelines for the information of participants/donors

33. Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

34. From the Harvard Medical Practice Study to the Luxembourg Declaration. Changes in the approach to patient safety. Closing remarks

38. How legislation on decisional capacity can negatively affect the feasibility of clinical trials in patients with dementia

40. How Are the Interests of Incapacitated Research Participants Protected through Legislation? An Italian Study on Legal Agency for Dementia Patients

46. A personalist approach to public-health ethics.

48. Evaluation of medical practices in France: Who is the best teacher?

49. The Italian National Centre for Rare Diseases: where research and public health translate into action.

50. Personalism for public health ethics.

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