A personalist approach to public-health ethics

Por Petrini, Carlo, Gainotti, Sabina
Publicado em 2008

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

Por Taruscio, Domenica, Gainotti, Sabina, Vittozzi, Luciano, Bianchi, Fabrizio, Ensini, Monica, Posada, Manuel
Publicado em 2012

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

Por Gentile, Stéphanie, Vignally, Pascal, Durand, Anne-Claire, Gainotti, Sabina, Sambuc, Roland, Gerbeaux, Patrick
Publicado em 2010

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

Por Taruscio, Domenica, Mollo, Emanuela, Gainotti, Sabina, Posada de la Paz, Manuel, Bianchi, Fabrizio, Vittozzi, Luciano
Publicado em 2014

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

Por McCormack, Pauline, Kole, Anna, Gainotti, Sabina, Mascalzoni, Deborah, Molster, Caron, Lochmüller, Hanns, Woods, Simon
Publicado no Eur J Hum Genet (2016)

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

Por Gainotti, Sabina, Mascalzoni, Deborah, Bros-Facer, Virginie, Petrini, Carlo, Floridia, Giovanna, Roos, Marco, Salvatore, Marco, Taruscio, Domenica
Publicado no Int J Environ Res Public Health (2018)

Characterization and classification of Rare Disease Registries by using exploratory data analyses

Por Coi, Alessio, Santoro, Michele, Lipucci, Michele, Bianucci, Anna Maria, Gainotti, Sabina, Mollo, Emanuela, Vittozzi, Luciano, Taruscio, Domenica, Bianchi, Fabrizio
Publicado no Orphanet J Rare Dis (2014)

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

Por Gainotti, Sabina, Fusari Imperatori, Susanna, Spila-Alegiani, Stefania, Maggiore, Laura, Galeotti, Francesca, Vanacore, Nicola, Petrini, Carlo, Raschetti, Roberto, Mariani, Claudio, Clerici, Francesca
Publicado em 2010

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

Por Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah
Publicado no Eur J Hum Genet (2016)

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

Por Gainotti, Sabina, Torreri, Paola, Wang, Chiuhui Mary, Reihs, Robert, Mueller, Heimo, Heslop, Emma, Roos, Marco, Badowska, Dorota Mazena, de Paulis, Federico, Kodra, Yllka, Carta, Claudio, Martìn, Estrella Lopez, Miller, Vanessa Rangel, Filocamo, Mirella, Mora, Marina, Thompson, Mark, Rubinstein, Yaffa, Posada de la Paz, Manuel, Monaco, Lucia, Lochmüller, Hanns, Taruscio, Domenica
Publicado no Eur J Hum Genet (2018)

Recommendations for Improving the Quality of Rare Disease Registries

Por Kodra, Yllka, Weinbach, Jérôme, Posada-de-la-Paz, Manuel, Coi, Alessio, Lemonnier, S. Lydie, van Enckevort, David, Roos, Marco, Jacobsen, Annika, Cornet, Ronald, Ahmed, S. Faisal, Bros-Facer, Virginie, Popa, Veronica, Van Meel, Marieke, Renault, Daniel, von Gizycki, Rainald, Santoro, Michele, Landais, Paul, Torreri, Paola, Carta, Claudio, Mascalzoni, Deborah, Gainotti, Sabina, Lopez, Estrella, Ambrosini, Anna, Müller, Heimo, Reis, Robert, Bianchi, Fabrizio, Rubinstein, Yaffa R., Lochmüller, Hanns, Taruscio, Domenica
Publicado no Int J Environ Res Public Health (2018)

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

Por Taruscio, Domenica, Agresta, Linda, Amato, Annalisa, Bernardo, Giuseppe, Bernardo, Luana, Braguti, Francesca, Carbone, Pietro, Carta, Claudio, Ceccarini, Marina, Censi, Federica, Coppola, Simona, Crialese, Patrizia, De Santis, Marta, Diemoz, Stefano, Donati, Carlo, Gainotti, Sabina, Ferrari, Gianluca, Floridia, Giovanna, Frank, Claudio, Frazzica, Rosa Giuseppa, Gentile, Amalia E., Granata, Orietta, Kodra, Yllka, Latrofa, Manuela, Laricchiuta, Paola, Magrelli, Armando, Morciano, Cristina, Polizzi, Agata, Razeto, Stefania, Salvatore, Marco, Sanseverino, Antonella, Savini, Daniele, Torreri, Paola, Tosto, Fabrizio, Villani, Flavia, Vincenti, Giorgio, Vittozzi, Luciano
Publicado em 2014