Resultados da busca - 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 por Ciara Staunton, Santa Slokenberga, Deborah Mascalzoni

    Publicado em 2019
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  2. 2
    Informed Consent in the Genomics Era

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

    Publicado em 2008
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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 por Ciara Staunton, Mahsa Shabani, Deborah Mascalzoni, Signe Mežinska, Santa Slokenberga

    Publicado em 2024
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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 por Pauline McCormack, Anna Kole, Sabina Gainotti, Deborah Mascalzoni, Caron Molster, Hanns Lochmüller, Simon Woods

    Publicado em 2016
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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 por Deborah Mascalzoni, Roberto Melotti, Cristian Pattaro, Peter P. Pramstaller, Martin Gögele, Alessandro De Grandi, Roberta Biasiotto

    Publicado em 2022
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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 por Sabina Gainotti, Deborah Mascalzoni, Virginie Bros‐Facer, Carlo Petrini, Giovanna Floridia, Marco Roos, Marco Salvatore, Domenica Taruscio

    Publicado em 2018
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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 por 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

    Publicado em 2014
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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 por 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

    Publicado em 2016
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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 por 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

    Publicado em 2019
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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 por 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

    Publicado em 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 por 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

    Publicado em 2017
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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 por 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

    Publicado em 2017
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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 por 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

    Publicado em 2024
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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 por 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

    Publicado em 2007
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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 por 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

    Publicado em 2015
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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 por 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

    Publicado em 2023
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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? por 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

    Publicado em 2019
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  18. 18
    Genetic Testing in Parkinson's Disease

    Genetic Testing in Parkinson's Disease por 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

    Publicado em 2023
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  19. 19
    Recommendations for Improving the Quality of Rare Disease Registries

    Recommendations for Improving the Quality of Rare Disease Registries por 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

    Publicado em 2018
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  20. 20
    The case for open science: rare diseases

    The case for open science: rare diseases por 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

    Publicado em 2020
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