検索結果 - Deborah Mascalzoni

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  1. 1
    The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks

    The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks 著者: Ciara Staunton, Santa Slokenberga, Deborah Mascalzoni

    出版事項 2019
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    Artigo
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  2. 2
    Informed Consent in the Genomics Era

    Informed Consent in the Genomics Era 著者: Deborah Mascalzoni, Andrew A. Hicks, Peter P. Pramstaller, Matthias Wjst

    出版事項 2008
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    Artigo
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  3. 3
    Ethical and social reflections on the proposed European Health Data Space

    Ethical and social reflections on the proposed European Health Data Space 著者: Ciara Staunton, Mahsa Shabani, Deborah Mascalzoni, Signe Mežinska, Santa Slokenberga

    出版事項 2024
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    Artigo
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  4. 4
    ‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research

    ‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research 著者: Pauline McCormack, Anna Kole, Sabina Gainotti, Deborah Mascalzoni, Caron Molster, Hanns Lochmüller, Simon Woods

    出版事項 2016
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    Artigo
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  5. 5
    Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process

    Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process 著者: Deborah Mascalzoni, Roberto Melotti, Cristian Pattaro, Peter P. Pramstaller, Martin Gögele, Alessandro De Grandi, Roberta Biasiotto

    出版事項 2022
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    Artigo
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  6. 6
    Meeting Patients’ Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues

    Meeting Patients’ Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues 著者: Sabina Gainotti, Deborah Mascalzoni, Virginie Bros‐Facer, Carlo Petrini, Giovanna Floridia, Marco Roos, Marco Salvatore, Domenica Taruscio

    出版事項 2018
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    Revisão
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  7. 7
    International Charter of principles for sharing bio-specimens and data

    International Charter of principles for sharing bio-specimens and data 著者: Deborah Mascalzoni, Edward S. Dove, Yaffa Rubinstein, Hugh Dawkins, Anna Kole, Pauline McCormack, Simon Woods, Olaf Rieß, Franz Schaefer, Hanns Lochmüller, Bartha Maria Knoppers, Mats Hansson

    出版事項 2014
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    Artigo
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  8. 8
    Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

    Improving the informed consent process in international collaborative rare disease research: effective consent for effective research 著者: Sabina Gainotti, Catherine Turner, Simon Woods, Anna Kole, Pauline McCormack, Hanns Lochmüller, Olaf Rieß, Volker Straub, Manuel Posada de la Paz, Domenica Taruscio, Deborah Mascalzoni

    出版事項 2016
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    Artigo
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  9. 9
    Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research

    Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research 著者: Melanie Goisauf, Gillian M. Martin, Heidi Beate Bentzen, Isabelle Budin‐Ljøsne, Lars Ursin, Anna Durnová, Liis Leitsalu, Katharine Smith, Sara Casati, Marialuisa Lavitrano, Deborah Mascalzoni, Martin Boeckhout, Michaela Th. Mayrhofer

    出版事項 2019
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    Artigo
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  10. 10
    From patients to partners: participant-centric initiatives in biomedical research

    From patients to partners: participant-centric initiatives in biomedical research 著者: Jane Kaye, Liam Curren, Nicholas Anderson, Kelly Edwards, Stephanie M. Fullerton, Nadja Kanellopoulou, David J. Lund, Daniel G. MacArthur, Deborah Mascalzoni, James Shepherd, Patrick L. Taylor, Sharon F. Terry, Stefan Winter

    出版事項 2012
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  11. 11
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research 著者: Isabelle Budin‐Ljøsne, Harriet Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, M K Javaid, Erica Jones, Višnja Katić, Amy Simpson, Deborah Mascalzoni

    出版事項 2017
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    Artigo
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  12. 12
    The challenges of the expanded availability of genomic information: an agenda-setting paper

    The challenges of the expanded availability of genomic information: an agenda-setting paper 著者: Pascal Borry, Heidi Beate Bentzen, Isabelle Budin‐Ljøsne, Martina C. Cornel, Heidi Howard, Oliver Feeney, Leigh Jackson, Deborah Mascalzoni, Álvaro Mendes, Borut Peterlin, Brígida Riso, Mahsa Shabani, Heather Skirton, Sigrid Sterckx, Danya F. Vears, Matthias Wjst, Heike Felzmann

    出版事項 2017
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    Artigo
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  13. 13
    The WHO genomics program of work for equitable implementation of human genomics for global health

    The WHO genomics program of work for equitable implementation of human genomics for global health 著者: Elena Ambrosino, Ahmad Abou Tayoun, Marc Abramowicz, Bin Alwi Zilfalil, Tiffany Boughtwood, Yosr Hamdi, Tim Hubbard, Yoshihiro Kato, Íscia Lopes‐Cendes, Partha P. Majumder, Deborah Mascalzoni, Rokhaya Ndiaye, Michèle Ramsay, Gabriela M. Repetto, Vorasuk Shotelersuk, Sherry Taylor, John C. Reeder, Anna Laura Ross

    出版事項 2024
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    Carta
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  14. 14
    The genetic study of three population microisolates in South Tyrol (MICROS): study design and epidemiological perspectives

    The genetic study of three population microisolates in South Tyrol (MICROS): study design and epidemiological perspectives 著者: Cristian Pattaro, Fabio Marroni, Alice Riegler, Deborah Mascalzoni, Irene Pichler, Cláudia B. Volpato, Umberta Dal Cero, Alessandro De Grandi, Clemens Egger, Agatha Eisendle, Christian Fuchsberger, Martin Gögele, Sara Pedrotti, Gerd K. Pinggera, Стефан Стефанов, Florian D. Vogl, Christian J. Wiedermann, Thomas Meitinger, Peter P. Pramstaller

    出版事項 2007
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    Artigo
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  15. 15
    The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results

    The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results 著者: Cristian Pattaro, Martin Gögele, Deborah Mascalzoni, Roberto Melotti, Christine Schwienbacher, Alessandro De Grandi, Luisa Foco, Yuri D’Elia, Barbara Linder, Christian Fuchsberger, Cosetta Minelli, Clemens Egger, Lisa S. Kofink, Stefano Zanigni, Torsten Schäfer, Maurizio Facheris, Sigurdur Smarason, Alessandra Rossini, Andrew A. Hicks, Helmuth Weiss, Peter P. Pramstaller

    出版事項 2015
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    Artigo
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  16. 16
    Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries

    Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries 著者: Roberta Biasiotto, Jennifer Viberg Johansson, Melaku Alemu, Virginia Romano, Heidi Beate Bentzen, Jane Kaye, Mirko Ancillotti, Johanna M. C. Blom, Gauthier Chassang, Dara Hallinan, Guðbjörg Andrea Jónsdóttir, Aníbal Monasterio Astobiza, Emmanuelle Rial‐Sebbag, David Rodríguez‐Arias, Nisha Shah, Lea Skovgaard, Ciara Staunton, Katharina Tschigg, Jorien Veldwijk, Deborah Mascalzoni

    出版事項 2023
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    Artigo
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  17. 17
    Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

    Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation? 著者: Deborah Mascalzoni, Heidi Beate Bentzen, Isabelle Budin‐Ljøsne, Lee A. Bygrave, Jessica Bell, Edward S. Dove, Christian Fuchsberger, Kristian Hveem, Michaela Th. Mayrhofer, Viviana Meraviglia, David R. O’Brien, Cristian Pattaro, Peter P. Pramstaller, Vojin Rakić, Alessandra Rossini, Mahsa Shabani, Dan Jerker B. Svantesson, Marta Tomasi, Lars Ursin, Matthias Wjst, Jane Kaye

    出版事項 2019
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    Revisão
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  18. 18
    Genetic Testing in Parkinson's Disease

    Genetic Testing in Parkinson's Disease 著者: Gian Pal, Lola Cook, Jeanine Schulze, Jennifer Verbrugge, Roy N. Alcalay, Marcelo Merello, Carolyn M. Sue, Soraya Bardien, Vincenzo Bonifati, Sun Ju Chung, Tatiana Foroud, Emilia Gatto, Anne Hall, Nobutaka Hattori, Tim Lynch, Karen Marder, Deborah Mascalzoni, Ivana Novaković, Avner Thaler, Deborah Raymond, Mehri Salari, Ali Shalash, Oksana Suchowersky, Niccolò E. Mencacci, Tanya Simuni, Rachel Saunders‐Pullman, Christine Klein

    出版事項 2023
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    Artigo
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  19. 19
    Recommendations for Improving the Quality of Rare Disease Registries

    Recommendations for Improving the Quality of Rare Disease Registries 著者: Yllka Kodra, Jérôme Weinbach, Manuel Posada de la Paz, Alessio Coi, Sophie Lemonnier, David van Enckevort, Marco Roos, Annika Jacobsen, Ronald Cornet, S Faisal Ahmed, Virginie Bros‐Facer, Veronica Popa, Marieke van Meel, Daniel Renault, Rainald von Gizycki, Michele Santoro, Paul Landais, Paola Torreri, Claudio Carta, Deborah Mascalzoni, Sabina Gainotti, Estrella López‐Martín, Anna Ambrosini, Heimo Müller, Robert I. Reis, Fabrizio Bianchi, Yaffa Rubinstein, Hanns Lochmüller, Domenica Taruscio

    出版事項 2018
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    Artigo
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  20. 20
    The case for open science: rare diseases

    The case for open science: rare diseases 著者: Yaffa Rubinstein, Peter N. Robinson, William A. Gahl, Paul Avillach, Gareth Baynam, Helene Cederroth, Rebecca Goodwin, Stephen C. Groft, Mats Hansson, Nomi L. Harris, Vojtech Huser, Deborah Mascalzoni, Julie A. McMurry, Matthew Might, Christoffer Nellåker, Barend Mons, Dina N. Paltoo, Jonathan Pevsner, Manuel Posada de la Paz, Alison P Rockett-Frase, Marco Roos, Tamar B. Rubinstein, Domenica Taruscio, David van Enckevort, Melissa Haendel

    出版事項 2020
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