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

by Taruscio, Domenica, Gainotti, Sabina, Vittozzi, Luciano, Bianchi, Fabrizio, Ensini, Monica, Posada, Manuel
Published 2012

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

by Taruscio, Domenica, Mollo, Emanuela, Gainotti, Sabina, Posada de la Paz, Manuel, Bianchi, Fabrizio, Vittozzi, Luciano
Published 2014

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

by Coi, Alessio, Santoro, Michele, Lipucci, Michele, Bianucci, Anna Maria, Gainotti, Sabina, Mollo, Emanuela, Vittozzi, Luciano, Taruscio, Domenica, Bianchi, Fabrizio
Published 2014

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

by Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah
Published 2016