Kết quả tìm kiếm - Mascalzoni, Deborah
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Rare disease research: Breaking the privacy barrier Bằng Mascalzoni, Deborah, Paradiso, Angelo, Hansson, Matts
Được phát hành 2014Text -
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Informed Consent in the Genomics Era Bằng Mascalzoni, Deborah, Hicks, Andrew, Pramstaller, Peter, Wjst, Matthias
Được phát hành 2008Text -
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Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen’s health through public-private initiatives Bằng Piciocchi, Cinzia, Ducato, Rossana, Martinelli, Lucia, Perra, Silvia, Tomasi, Marta, Zuddas, Carla, Mascalzoni, Deborah
Được phát hành 2017Text -
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‘You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research Bằng McCormack, Pauline, Kole, Anna, Gainotti, Sabina, Mascalzoni, Deborah, Molster, Caron, Lochmüller, Hanns, Woods, Simon
Được phát hành 2016Text -
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How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF) Bằng Howard, Heidi Carmen, Mascalzoni, Deborah, Mabile, Laurence, Houeland, Gry, Rial-Sebbag, Emmanuelle, Cambon-Thomsen, Anne
Được phát hành 2017Text -
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Meeting Patients’ Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues Bằng Gainotti, Sabina, Mascalzoni, Deborah, Bros-Facer, Virginie, Petrini, Carlo, Floridia, Giovanna, Roos, Marco, Salvatore, Marco, Taruscio, Domenica
Được phát hành 2018Text -
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Preferences of the Public for Sharing Health Data: Discrete Choice Experiment Bằng Viberg Johansson, Jennifer, Bentzen, Heidi Beate, Shah, Nisha, Haraldsdóttir, Eik, Jónsdóttir, Guðbjörg Andrea, Kaye, Jane, Mascalzoni, Deborah, Veldwijk, Jorien
Được phát hành 2021Text -
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Improving the informed consent process in international collaborative rare disease research: effective consent for effective research Bằng Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah
Được phát hành 2016Text -
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Comparison of participant information and informed consent forms of five European studies in genetic isolated populations Bằng Mascalzoni, Deborah, Janssens, A Cecile JW, Stewart, Alison, Pramstaller, Peter, Gyllensten, Ulf, Rudan, Igor, van Duijn, Cornelia M, Wilson, James F, Campbell, Harry, Quillan, Ruth Mc
Được phát hành 2010Text -
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International Charter of principles for sharing bio-specimens and data Bằng Mascalzoni, Deborah, Dove, Edward S, Rubinstein, Yaffa, Dawkins, Hugh J S, Kole, Anna, McCormack, Pauline, Woods, Simon, Riess, Olaf, Schaefer, Franz, Lochmüller, Hanns, Knoppers, Bartha M, Hansson, Mats
Được phát hành 2015Text -
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International Charter of principles for sharing bio-specimens and data Bằng Mascalzoni, Deborah, Dove, Edward S, Rubinstein, Yaffa, Dawkins, Hugh JS, Kole, Anna, McCormack, Pauline, Woods, Simon, Riess, Olaf, Schaefer, Franz, Lochmüller, Hanns, Knoppers, Bartha M, Hansson, Mats
Được phát hành 2016Text -
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Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research Bằng Goisauf, Melanie, Martin, Gillian, Bentzen, Heidi Beate, Budin-Ljøsne, Isabelle, Ursin, Lars, Durnová, Anna, Leitsalu, Liis, Smith, Katharine, Casati, Sara, Lavitrano, Marialuisa, Mascalzoni, Deborah, Boeckhout, Martin, Mayrhofer, Michaela Th.
Được phát hành 2019Text -
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Correction: Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research Bằng Goisauf, Melanie, Martin, Gillian, Bentzen, Heidi Beate, Budin-Ljøsne, Isabelle, Ursin, Lars, Durnová, Anna, Leitsalu, Liis, Smith, Katharine, Casati, Sara, Lavitrano, Marialuisa, Mascalzoni, Deborah, Boeckhout, Martin, Mayrhofer, Michaela Th
Được phát hành 2019Text -
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Balancing scientific interests and the rights of participants in designing a recall by genotype study Bằng Mascalzoni, Deborah, Biasiotto, Roberta, Borsche, Max, Brüggemann, Norbert, De Grandi, Alessandro, Goegele, Martin, Frygner-Holm, Sara, Klein, Christine, Kösters, Maria, Staunton, Ciara, Pramstaller, Peter P., Krawczak, Michael, Hicks, Andrew A.
Được phát hành 2021Text