125 results on '"Gainotti, Sabina"'
Search Results
2. Organ Transplantation From Nonstandard Risk Donors: Midway Between Rigid and Flexible Rules
3. The Role of Solidarity(-ies) in Rare Diseases Research
4. Registries or non-pharmacological observational studies? An operational attempt to draw the line and to provide some suggestions for the ethical evaluation of rare disease registries.
5. The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers
6. The Quality of Rare Disease Registries : Evaluation and Characterization
7. Rare Disease Registries Classification and Characterization : A Data Mining Approach
8. Decentralized clinical trials (DCTs): A few ethical considerations
9. How Legislation on Decisional Capacity Can Negatively Affect the Feasibility of Clinical Trials in Patients with Dementia
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
12. Etica della ricerca durante la pandemia di COVID-19: studi osservazionali e in particolare epidemiologici
13. Research ethics during the COVID-19 pandemic: observational and, in particular, epidemiological studies ISS COVID-19 Bioethics Working Group
14. Digital support for contact tracing during the pandemic: ethical and governance considerations ISS Bioethics COVID-19 Working Group
15. EPIRARE survey on activities and needs of rare disease registries in the European Union
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
21. Meeting Patients’ Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues
22. Recommendations for Improving the Quality of Rare Disease Registries
23. From Experimental Procedure to Clinical Practice: How Much Evidence Do We Need in Uterine Transplantation?
24. Is There a Right to Get a Right Diagnosis Whenever Possible? Ethical and Social Issues in Dealing with Undiagnosed Rare Diseases
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
31. Overview of existing initiatives to develop and improve access and data sharing in rare disease registries and biobanks worldwide
32. ‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research
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
35. Analysis of the Italian Focus Group - Comments on the Italian Focus Group
36. The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration
37. Characterization and classification of Rare Disease Registries by using exploratory data analyses
38. How legislation on decisional capacity can negatively affect the feasibility of clinical trials in patients with dementia
39. Therapeutic Misconception in Early Phase Trials: Relation is the Cure
40. How Are the Interests of Incapacitated Research Participants Protected through Legislation? An Italian Study on Legal Agency for Dementia Patients
41. Nonurgent patients in the emergency department? A French formula to prevent misuse
42. Insurance Policies for Clinical Trials in the United States and in some European Countries
43. Antipsychotics in individuals with intellectual disability
44. Test genetici: a che punto siamo in Europa? A margine del Rapporto e delle Raccomandazioni della Commissione Europea sugli aspetti etici, giuridici e sociali dei test genetici
45. A study of the Healthy Growth Charter in socially disadvantaged children.
46. A personalist approach to public-health ethics.
47. La sociologia dell'errore in medicina: lezioni americane.
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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