S. Gainotti

发表

Overview of existing initiatives to develop and improve access and data sharing in rare disease registries and biobanks worldwide

D. Taruscio, Hanns Lochmüller, Rachel Thompson, 2016 .

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

D. Taruscio, Hanns Lochmüller, O. Riess, 2016, European Journal of Human Genetics.

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

Simon Woods, Pauline McCormack, Hanns Lochmüller, 2016, European Journal of Human Genetics.

Ethical Models Underpinning Responses to Threats to Public Health: A Comparison of Approaches to Communicable Disease Control in Europe

C. Petrini, S. Gainotti, D. Shickle, 2008, Bioethics.

Is There a Right to Get a Right Diagnosis Whenever Possible? Ethical and Social Issues in Dealing with Undiagnosed Rare Diseases

D. Taruscio, M. Roos, M. Salvatore, 2018 .

Recommendations for Improving the Quality of Rare Disease Registries

F. Bianchi, Heimo Müller, D. van Enckevort, 2018, International journal of environmental research and public health.

The EPIRARE proposal of a set of indicators and common data elements for the European platform for rare disease registration

F. Bianchi, D. Taruscio, M. Posada de la Paz, 2014, Archives of Public Health.

From Experimental Technique to Clinical Practice: Which Pathway in Transplant Surgery?

G. Floridia, C. Petrini, S. Gainotti, 2019, Transplantation proceedings.

From compulsory to voluntary immunisation: Italy’s National Vaccination Plan (2005–7) and the ethical and organisational challenges facing public health policy-makers across Europe

C. Petrini, S. Gainotti, N. Moran, 2008, Journal of Medical Ethics.

Antipsychotics in individuals with intellectual disability

C. Petrini, S. Gainotti, F. Galeotti, 2008, The Lancet.

Insurance Policies for Clinical Trials in the United States and in some European Countries

C. Petrini, S. Gainotti, 2010 .

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

D. Taruscio, M. Salvatore, A. Polizzi, 2014, Blood transfusion = Trasfusione del sangue.

From Experimental Procedure to Clinical Practice: How Much Evidence Do We Need in Uterine Transplantation?

C. Petrini, S. Gainotti, Carlo Petrini, 2018 .

A personalist approach to public-health ethics.

C. Petrini, S. Gainotti, 2008, Bulletin of the World Health Organization.

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

Domenica Taruscio, Emma Heslop, Jes Rahbek, 2013, Human mutation.

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

D. Taruscio, M. Roos, M. Salvatore, 2018, International journal of environmental research and public health.

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

Marco Roos, Domenica Taruscio, Hanns Lochmüller, 2018, European Journal of Human Genetics.

Decentralized clinical trials (DCTs): A few ethical considerations

G. Gussoni, C. Petrini, S. Gainotti, 2022, Frontiers in Public Health.

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

G. Damiani, S. Gainotti, A. D. Belvis, 2005 .

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

F. Clerici, C. Mariani, C. Petrini, 2010, PloS one.

Organ Transplantation From Nonstandard Risk Donors: Midway Between Rigid and Flexible Rules.

Alessandro Nanni Costa, G. Floridia, C. Petrini, 2019, Transplantation proceedings.

Ethical Issues in Uterine Transplantation: Psychological Implications and Informed Consent.

A. Nanni Costa, C. Petrini, S. Gainotti, 2017, Transplantation proceedings.

The Current Situation and Needs of Rare Disease Registries in Europe

F. Bianchi, D. Taruscio, M. Posada, 2014, Public Health Genomics.

A Model for the European Platform for Rare Disease Registries

D. Taruscio, S. Gainotti, L. Vittozzi, 2014, Public Health Genomics.

Post–COVID-19 Lung Transplantation Italian Pivotal Protocol: Some Ethical Considerations

G. Floridia, F. Rea, P. Grossi, 2022, Transplantation Proceedings.

The Quality of Rare Disease Registries: Evaluation and Characterization

Domenica Taruscio, Manuel Posada de la Paz, Alessio Coi, 2016, Public Health Genomics.

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

Robert Reihs, D. Taruscio, M. Roos, 2018, European Journal of Human Genetics.

Informed consent in clinical research in France: assessment and factors associated with therapeutic misconception

I. Durand-zaleski, P. Durieux, S. Gainotti, 2008, Journal of Medical Ethics.

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

Sabina Gainotti, R. Sambuc, S. Gainotti, 2010, BMC health services research.

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

D. Taruscio, D. Mascalzoni, C. Petrini, 2017, Advances in experimental medicine and biology.

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

R. Chattat, C. Petrini, S. Gainotti, 2012, Drugs & aging.

Rare Disease Registries Classification and Characterization: A Data Mining Approach

Domenica Taruscio, Michele Santoro, Alessio Coi, 2015, Public Health Genomics.

How Legislation on Decisional Capacity Can Negatively Affect the Feasibility of Clinical Trials in Patients with Dementia

R. Chattat, C. Petrini, S. Gainotti, 2012, Drugs & Aging.

EPIRARE survey on activities and needs of rare disease registries in the European Union

F. Bianchi, D. Taruscio, M. Posada, 2012, Orphanet Journal of Rare Diseases.

Informed consent in clinical research in France: assessment and factors associated with therapeutic misconception

I. Durand-zaleski, P. Durieux, S. Gainotti, 2008, Journal of Medical Ethics.