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Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, reseachers. and regulators.
Published in:
Frontiers in Psychiatry, 2023, v. 13, p. 1, doi. 10.3389/fpsyt.2022.1107037
By:
- Blom, Johanna Maria Catharina;
- Benatti, Cristina;
- Mascalzoni, Deborah;
- Tascedda, Fabio;
- Pani, Luca
Publication type:
Article
Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem.
Published in:
Frontiers in Psychiatry, 2022, v. 13, p. 1, doi. 10.3389/fpsyt.2022.873392
By:
- Parziale, Andrea;
- Mascalzoni, Deborah
Publication type:
Article
Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.
Published in:
2017
By:
- Budin-Ljøsne, Isabelle;
- Teare, Harriet J. A.;
- Kaye, Jane;
- Beck, Stephan;
- Bentzen, Heidi Beate;
- Caenazzo, Luciana;
- Collett, Clive;
- D'Abramo, Flavio;
- Felzmann, Heike;
- Finlay, Teresa;
- Javaid, Muhammad Kassim;
- Jones, Erica;
- Katić, Višnja;
- Simpson, Amy;
- Mascalzoni, Deborah
Publication type:
journal article
Rare diseases and now rare data?
Published in:
Nature Reviews Genetics, 2013, v. 14, n. 6, p. 372, doi. 10.1038/nrg3494
By:
- Mascalzoni, Deborah;
- Knoppers, Bartha Maria;
- Aymé, Ségolène;
- Macilotti, Matteo;
- Dawkins, Hugh;
- Woods, Simon;
- Hansson, Mats G.
Publication type:
Article
From patients to partners: participant-centric initiatives in biomedical research.
Published in:
Nature Reviews Genetics, 2012, v. 13, n. 5, p. 371, doi. 10.1038/nrg3218
By:
- Kaye, Jane;
- Curren, Liam;
- Anderson, Nick;
- Edwards, Kelly;
- Fullerton, Stephanie M.;
- Kanellopoulou, Nadja;
- Lund, David;
- MacArthur, Daniel G.;
- Mascalzoni, Deborah;
- Shepherd, James;
- Taylor, Patrick L.;
- Terry, Sharon F.;
- Winter, Stefan F.
Publication type:
Article
Genetic and Metabolic Determinants of Atrial Fibrillation in a General Population Sample: The CHRIS Study.
Published in:
Biomolecules (2218-273X), 2021, v. 11, n. 11, p. 1663, doi. 10.3390/biom11111663
By:
- Emmert, David B.;
- Vukovic, Vladimir;
- Dordevic, Nikola;
- Weichenberger, Christian X.;
- Losi, Chiara;
- D'Elia, Yuri;
- Volpato, Claudia;
- Hernandes, Vinicius V.;
- Gögele, Martin;
- Foco, Luisa;
- Pontali, Giulia;
- Mascalzoni, Deborah;
- Domingues, Francisco S.;
- Paulmichl, Rupert;
- Pramstaller, Peter P.;
- Pattaro, Cristian;
- Rossini, Alessandra;
- Rainer, Johannes;
- Fuchsberger, Christian;
- De Bortoli, Marzia
Publication type:
Article
International Charter of principles for sharing bio-specimens and data.
Published in:
European Journal of Human Genetics, 2015, v. 23, n. 6, p. 721, doi. 10.1038/ejhg.2014.197
By:
- 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
Publication type:
Article
Comparison of participant information and informed consent forms of five European studies in genetic isolated populations.
Published in:
European Journal of Human Genetics, 2010, v. 18, n. 3, p. 296, doi. 10.1038/ejhg.2009.155
By:
- Mascalzoni, Deborah;
- Janssens, A. Cecile J. W.;
- Stewart, Alison;
- Pramstaller, Peter;
- Gyllensten, Ulf;
- Rudan, Igor;
- van Duijn, Cornelia M.;
- Wilson, James F.;
- Campbell, Harry;
- Quillan, Ruth Mc
Publication type:
Article
Clinical relevance and translational impact of reduced penetrance in genetic movement disorders.
Published in:
Medizinische Genetik, 2022, v. 34, n. 2, p. 151, doi. 10.1515/medgen-2022-2128
By:
- Heinzel, Sebastian;
- Mascalzoni, Deborah;
- Bäumer, Tobias;
- Berg, Daniela;
- Kasten, Meike;
- Brüggemann, Norbert
Publication type:
Article
Correction: Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.
Published in:
2019
By:
- 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
Publication type:
Correction Notice
Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research.
Published in:
PLoS ONE, 2019, v. 14, n. 9, p. 1, doi. 10.1371/journal.pone.0221496
By:
- 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.
Publication type:
Article
What ethical approaches are used by scientists when sharing health data? An interview study.
Published in:
2022
By:
- Viberg Johansson, Jennifer;
- Bentzen, Heidi Beate;
- Mascalzoni, Deborah
Publication type:
journal article
Italians locked down: people's responses to early COVID-19 pandemic public health measures.
Published in:
Humanities & Social Sciences Communications, 2022, v. 9, n. 1, p. 1, doi. 10.1057/s41599-022-01358-3
By:
- Romano, Virginia;
- Ancillotti, Mirko;
- Mascalzoni, Deborah;
- Biasiotto, Roberta
Publication type:
Article
The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results.
Published in:
2015
By:
- Pattaro, Cristian;
- Gögele, Martin;
- Mascalzoni, Deborah;
- Melotti, Roberto;
- Schwienbacher, Christine;
- De Grandi, Alessandro;
- Foco, Luisa;
- D'Elia, Yuri;
- Linder, Barbara;
- Fuchsberger, Christian;
- Minelli, Cosetta;
- Egger, Clemens;
- Kofink, Lisa S.;
- Zanigni, Stefano;
- Schäfer, Torsten;
- Facheris, Maurizio F.;
- Smárason, Sigurður V.;
- Rossini, Alessandra;
- Hicks, Andrew A.;
- Weiss, Helmuth
Publication type:
journal article
Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues.
Published in:
International Journal of Environmental Research & Public Health, 2018, v. 15, n. 10, p. 2072, doi. 10.3390/ijerph15102072
By:
- Gainotti, Sabina;
- Mascalzoni, Deborah;
- Bros-Facer, Virginie;
- Petrini, Carlo;
- Floridia, Giovanna;
- Roos, Marco;
- Salvatore, Marco;
- Taruscio, Domenica
Publication type:
Article
Recommendations for Improving the Quality of Rare Disease Registries.
Published in:
International Journal of Environmental Research & Public Health, 2018, v. 15, n. 8, p. 1644, doi. 10.3390/ijerph15081644
By:
- 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
Publication type:
Article
Practical Barriers and Ethical Challenges in Genetic Data Sharing.
Published in:
International Journal of Environmental Research & Public Health, 2014, v. 11, n. 8, p. 8383, doi. 10.3390/ijerph110808383
By:
- Simpson, Claire L.;
- Goldenberg, Aaron J.;
- Culverhouse, Rob;
- Daley, Denise;
- Igo Jr., Robert P.;
- Jarvik, Gail P.;
- Mandal, Diptasri M.;
- Mascalzoni, Deborah;
- Montgomery, Courtney Gray;
- Pierce, Brandon L.;
- Plaetke, Rosemarie;
- Shete, Sanjay;
- Goddard, Katrina A. B.;
- Stein, Catherine M.
Publication type:
Article
Genetic Testing in Parkinson's Disease.
Published in:
Movement Disorders, 2023, v. 38, n. 8, p. 1384, doi. 10.1002/mds.29500
By:
- Pal, Gian;
- Cook, Lola;
- Schulze, Jeanine;
- Verbrugge, Jennifer;
- Alcalay, Roy N.;
- Merello, Marcelo;
- Sue, Carolyn M.;
- Bardien, Soraya;
- Bonifati, Vincenzo;
- Chung, Sun Ju;
- Foroud, Tatiana;
- Gatto, Emilia;
- Hall, Anne;
- Hattori, Nobutaka;
- Lynch, Tim;
- Marder, Karen;
- Mascalzoni, Deborah;
- Novaković, Ivana;
- Thaler, Avner;
- Raymond, Deborah
Publication type:
Article
International Genetic Testing and Counseling Practices for Parkinson's Disease.
Published in:
Movement Disorders, 2023, v. 38, n. 8, p. 1527, doi. 10.1002/mds.29442
By:
- Saunders‐Pullman, Rachel;
- Raymond, Deborah;
- Ortega, Roberto A.;
- Shalash, Ali;
- Gatto, Emilia;
- Salari, Mehri;
- Markgraf, Maggie;
- Alcalay, Roy N.;
- Mascalzoni, Deborah;
- Mencacci, Niccolò E.;
- Bonifati, Vincenzo;
- Merello, Marcelo;
- Chung, Sun Ju;
- Novakovic, Ivana;
- Bardien, Soraya;
- Pal, Gian;
- Hall, Anne;
- Hattori, Nobutaka;
- Lynch, Timothy;
- Thaler, Avner
Publication type:
Article
Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research.
Published in:
Frontiers in Genetics, 2022, v. 13, p. 1, doi. 10.3389/fgene.2022.719317
By:
- Staunton, Ciara;
- Slokenberga, Santa;
- Parziale, Andrea;
- Mascalzoni, Deborah
Publication type:
Article
Invited Editorial: Patient centric initiatives (PCIs) – a shift in the governance of science: Lessons from the biobanks world.
Published in:
Research Ethics, 2013, v. 9, n. 2, p. 52, doi. 10.1177/1747016113488860
By:
- Mascalzoni, Deborah;
- Pramstaller, Peter;
- Corradetti, Claudio
Publication type:
Article
Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants.
Published in:
Frontiers in Medicine, 2024, p. 1, doi. 10.3389/fmed.2024.1408600
By:
- Staunton, Ciara;
- Blom, Johanna M. C.;
- Mascalzoni, Deborah
Publication type:
Article
Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?
Published in:
2019
By:
- Mascalzoni, Deborah;
- Bentzen, Heidi Beate;
- Budin-Ljøsne, Isabelle;
- Bygrave, Lee Andrew;
- Bell, Jessica;
- Dove, Edward S.;
- Fuchsberger, Christian;
- Hveem, Kristian;
- Mayrhofer, Michaela Th.;
- Meraviglia, Viviana;
- O'Brien, David R.;
- Pattaro, Cristian;
- Pramstaller, Peter P.;
- Rakić, Vojin;
- Rossini, Alessandra;
- Shabani, Mahsa;
- Svantesson, Dan Jerker B.;
- Tomasi, Marta;
- Ursin, Lars;
- Wjst, Matthias
Publication type:
journal article
Informed Consent in the Genomics Era.
Published in:
PLoS Medicine, 2008, v. 5, n. 9, p. e192, doi. 10.1371/journal.pmed.0050192
By:
- Mascalzoni, Deborah;
- Hicks, Andrew;
- Pramstaller, Peter;
- Wjst, Matthias
Publication type:
Article
Prevalence and determinants of serum antibodies to SARS-CoV-2 in the general population of the Gardena valley.
Published in:
Epidemiology & Infection, 2021, v. 149, p. 1, doi. 10.1017/S0950268821001886
By:
- Melotti, Roberto;
- Scaggiante, Federica;
- Falciani, Michela;
- Weichenberger, Christian X.;
- Foco, Luisa;
- Lombardo, Stefano;
- De Grandi, Alessandro;
- von Laer, Dorothee;
- Mahlknecht, Angelika;
- Pramstaller, Peter P.;
- Pagani, Elisabetta;
- Meier, Horand;
- Gaertner, Timon;
- Troi, Christina;
- Mascalzoni, Deborah;
- Pattaro, Cristian;
- Mian, Michael
Publication type:
Article
Microbiota, type 2 diabetes and non-alcoholic fatty liver disease: protocol of an observational study.
Published in:
2019
By:
- Motta, Benedetta M.;
- Grander, Christoph;
- Gögele, Martin;
- Foco, Luisa;
- Vukovic, Vladimir;
- Melotti, Roberto;
- Fuchsberger, Christian;
- De Grandi, Alessandro;
- Cantaloni, Chiara;
- Picard, Anne;
- Mascalzoni, Deborah;
- Rossini, Alessandra;
- Pattaro, Cristian;
- Tilg, Herbert;
- Pramstaller, Peter P.
Publication type:
journal article
The genetic study of three population microisolates in South Tyrol (MICROS): study design and epidemiological perspectives.
Published in:
BMC Medical Genetics, 2007, v. 8, p. 29, doi. 10.1186/1471-2350-8-29
By:
- Pattaro, Cristian;
- Marroni, Fabio;
- Riegler, Alice;
- Mascalzoni, Deborah;
- Pichler, Irene;
- Volpato, Claudia B.;
- Dal Cero, Umberta;
- De Grandi, Alessandro;
- Egger, Clemens;
- Eisendle, Agatha;
- Fuchsberger, Christian;
- Gögele, Martin;
- Pedrotti, Sara;
- Pinggera, Gerd K.;
- Stefanov, Stefan A.;
- Vogl, Florian D.;
- Wiedermann, Christian J.;
- Meitinger, Thomas;
- Pramstaller, Peter P.
Publication type:
Article

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