Deborah Mascalzoni

Mass-Scale G2B Data Sharing in an Emergency: between the GDPR, Data Governance Act, and European Health Data Space

Parziale, Andrea; Pulice, Elisabetta; Mascalzoni, Deborah

Part of European Journal of Health Law, p. 314-345, 2026

• DOI for Mass-Scale G2B Data Sharing in an Emergency: between the GDPR, Data Governance Act, and European Health Data Space
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Two-faced Janus? Consent to participate in research and consent to data processing in the EHDS era: a comparative analysis of requirements and standards in eight European countries

Marelli, Luca; Colussi, Ilaria; Schlünder, Irene; Bahr, Anne et al.

Part of JOURNAL OF LAW AND THE BIOSCIENCES, 2026

• DOI for Two-faced Janus? Consent to participate in research and consent to data processing in the EHDS era: a comparative analysis of requirements and standards in eight European countries
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Human mitochondrial DNA in public metagenomes: Opportunity or privacy threat?

Sarhan, Mohamed S.; Antonello, Giacomo; Weissensteiner, Hansi; Mengoni, Claudia et al.

Part of Cell, p. 2561-2566, 2025

• DOI for Human mitochondrial DNA in public metagenomes: Opportunity or privacy threat?

Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship

Ancillotti, Mirko; Grauman, Åsa; Veldwijk, Jorien; Flobak, Åsmund et al.

Part of BMC Medical Informatics and Decision Making, 2025

• DOI for Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship
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Framing exposure to excessive and improper lighting as light-public health

Ancillotti, Mirko; Conticelli, Elisa; Tondelli, Simona; Mascalzoni, Deborah

Part of Discover Public Health, 2025

• DOI for Framing exposure to excessive and improper lighting as light-public health
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Mass-Scale G2B Data Sharing in an Emergency: between the GDPR, Data Governance Act, and European Health Data Space

Parziale, Andrea; Pulice, Elisabetta; Mascalzoni, Deborah

Part of European Journal of Health Law, p. 314-345, 2026

• DOI for Mass-Scale G2B Data Sharing in an Emergency: between the GDPR, Data Governance Act, and European Health Data Space
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Two-faced Janus? Consent to participate in research and consent to data processing in the EHDS era: a comparative analysis of requirements and standards in eight European countries

Marelli, Luca; Colussi, Ilaria; Schlünder, Irene; Bahr, Anne et al.

Part of JOURNAL OF LAW AND THE BIOSCIENCES, 2026

• DOI for Two-faced Janus? Consent to participate in research and consent to data processing in the EHDS era: a comparative analysis of requirements and standards in eight European countries
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Human mitochondrial DNA in public metagenomes: Opportunity or privacy threat?

Sarhan, Mohamed S.; Antonello, Giacomo; Weissensteiner, Hansi; Mengoni, Claudia et al.

Part of Cell, p. 2561-2566, 2025

• DOI for Human mitochondrial DNA in public metagenomes: Opportunity or privacy threat?

Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship

Ancillotti, Mirko; Grauman, Åsa; Veldwijk, Jorien; Flobak, Åsmund et al.

Part of BMC Medical Informatics and Decision Making, 2025

• DOI for Exploring doctors’ perspectives on precision medicine and AI in colorectal cancer: opportunities and challenges for the doctor-patient relationship
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Framing exposure to excessive and improper lighting as light-public health

Ancillotti, Mirko; Conticelli, Elisa; Tondelli, Simona; Mascalzoni, Deborah

Part of Discover Public Health, 2025

• DOI for Framing exposure to excessive and improper lighting as light-public health
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Cohort Profile: the Cooperative Health Research in South Tyrol study

Lundin, Rebecca; Melotti, Roberto; Barin, Laura; Goegele, Martin et al.

Part of International Journal of Epidemiology, 2025

• DOI for Cohort Profile: the Cooperative Health Research in South Tyrol study
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How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study

Tschigg, Katharina; Consoli, Luca; Brüggemann, Norbert; Hicks, Andrew A. et al.

Part of Journal of Community Genetics, p. 615-630, 2024

• DOI for How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study
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The WHO genomics program of work for equitable implementation of human genomics for global health

Ambrosino, Elena; Abou Tayoun, Ahmad N.; Abramowicz, Marc; Zilfalil, Bin Alwi et al.

Part of Nature Medicine, p. 2711-2713, 2024

• DOI for The WHO genomics program of work for equitable implementation of human genomics for global health

Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI

Staunton, Ciara; Biasiotto, Roberta; Tschigg, Katharina; Mascalzoni, Deborah

Part of Asian Bioethics Review, p. 423-435, 2024

• DOI for Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI
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Dynamic governance: A new era for consent for stem cell research

Isasi, Rosario; Bentzen, Heidi B.; Fabbri, Morris; Fuhr, Antonie et al.

Part of Stem Cell Reports, p. 1233-1241, 2024

• DOI for Dynamic governance: A new era for consent for stem cell research
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Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants

Staunton, Ciara; Blom, Johanna M. C.; Mascalzoni, Deborah

Part of Frontiers in Medicine, 2024

• DOI for Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants
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International Genetic Testing and Counseling Practices for Parkinson's Disease.

Saunders-Pullman, Rachel; Raymond, Deborah; Ortega, Roberto A; Shalash, Ali et al.

Part of Movement Disorders, p. 1527-1535, 2023

• DOI for International Genetic Testing and Counseling Practices for Parkinson's Disease.

Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.

Biasiotto, Roberta; Viberg Johansson, Jennifer; Alemu, Melaku Birhanu; Romano, Virginia et al.

Part of Journal of Medical Internet Research, 2023

• DOI for Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.

Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study

Biasiotto, Roberta; Kösters, Maria; Tschigg, Katharina; Pramstaller, Peter P et al.

Part of European Journal of Human Genetics, p. 1218-1227, 2023

• DOI for Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study
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Precision cancer medicine and the doctor-patient relationship: a systematic review and narrative synthesis

Grauman, Åsa; Ancillotti, Mirko; Veldwijk, Jorien; Mascalzoni, Deborah

Part of BMC Medical Informatics and Decision Making, 2023

• DOI for Precision cancer medicine and the doctor-patient relationship: a systematic review and narrative synthesis
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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, researchers, and regulators

Blom, Johanna Maria Catharina; Benatti, Cristina; Mascalzoni, Deborah; Tascedda, Fabio et al.

Part of Frontiers in Psychiatry, 2023

• DOI for Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators
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The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases

Laurie, Steven; Piscia, Davide; Matalonga, Leslie; Corvo, Alberto et al.

Part of Human Mutation, p. 717-733, 2022

• DOI for The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases
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Italians locked down: people's responses to early COVID-19 pandemic public health measures

Romano, Virginia; Ancillotti, Mirko; Mascalzoni, Deborah; Biasiotto, Roberta

Part of Humanities and Social Sciences Communications, 2022

• DOI for Italians locked down: people's responses to early COVID-19 pandemic public health measures
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Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process

Mascalzoni, Deborah; Melotti, Roberto; Pattaro, Cristian; Pramstaller, Peter Paul et al.

Part of European Journal of Human Genetics, p. 1391-1397, 2022

• DOI for Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
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Differential and shared genetic effects on kidney function between diabetic and non-diabetic individuals

Winkler, Thomas W.; Rasheed, Humaira; Teumer, Alexander; Gorski, Mathias et al.

Part of Communications Biology, 2022

• DOI for Differential and shared genetic effects on kidney function between diabetic and non-diabetic individuals
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Clinical relevance and translational impact of reduced penetrance in genetic movement disorders

Heinzel, Sebastian; Mascalzoni, Deborah; Bäumer, Tobias; Berg, Daniela et al.

Part of Medizinische Genetik, p. 151-156, 2022

• DOI for Clinical relevance and translational impact of reduced penetrance in genetic movement disorders
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What ethical approaches are used by scientists when sharing health data?: An interview study

Viberg, Jennifer; Bentzen, Heidi Beate; Mascalzoni, Deborah

Part of BMC Medical Ethics, 2022

• DOI for What ethical approaches are used by scientists when sharing health data?: An interview study
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Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries

Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Atutornu, Jerome et al.

Part of Genetics in Medicine, p. 1120-1129, 2022

• DOI for Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
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Prospective epidemiological, molecular, and genetic characterization of a novel coronavirus disease in the Val Venosta/Vinschgau: the CHRIS COVID-19 study protocol

Pattaro, Cristian; Barbieri, Giulia; Foco, Luisa; Weichenberger, Christian X. et al.

Part of Pathogens and Global Health, p. 128-136, 2022

• DOI for Prospective epidemiological, molecular, and genetic characterization of a novel coronavirus disease in the Val Venosta/Vinschgau: the CHRIS COVID-19 study protocol
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Governance of Access in Biobanking: The Case of Telethon Network of Genetic Biobanks

Iacomussi, Sofia; Casareto, Lorena; Locatelli, Manuela; Wang, Chiuhui Mary et al.

Part of Biopreservation and Biobanking, p. 483-492, 2021

• DOI for Governance of Access in Biobanking: The Case of Telethon Network of Genetic Biobanks
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Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants

Staunton, Ciara; Kösters, Maria; Pramstaller, Peter P.; Mascalzoni, Deborah

Part of Journal of Community Genetics, p. 577-592, 2021

• DOI for Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants
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Italian public's views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study

Romano, Virginia; Milne, Richard; Mascalzoni, Deborah

Part of Wellcome Open Research, 2021

• DOI for Italian public's views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study
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Genetic and Metabolic Determinants of Atrial Fibrillation in a General Population Sample: The CHRIS Study

Emmert, David B.; Vukovic, Vladimir; Dordevic, Nikola; Weichenberger, Christian X. et al.

Part of Biomolecules, 2021

• DOI for Genetic and Metabolic Determinants of Atrial Fibrillation in a General Population Sample: The CHRIS Study
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Balancing scientific interests and the rights of participants in designing a recall by genotype study

Mascalzoni, Deborah; Biasiotto, Roberta; Borsche, Max; Brüggemann, Norbert et al.

Part of European Journal of Human Genetics, p. 1146-1157, 2021

• DOI for Balancing scientific interests and the rights of participants in designing a recall by genotype study
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Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Anwer, Shamim et al.

Part of Genome Medicine, 2021

• DOI for Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
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Task matters-challenging the motor system allows distinguishing unaffected Parkin mutation carriers from mutation-free controls

Prasuhn, Jannik; Borsche, Max; Hicks, Andrew A.; Goegele, Martin et al.

Part of Parkinsonism & Related Disorders, p. 101-104, 2021

• DOI for Task matters-challenging the motor system allows distinguishing unaffected Parkin mutation carriers from mutation-free controls

Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

Shah, N.; Viberg Johansson, Jennifer; Haraldsdóttir, E.; Bentzen, H.B. et al.

Part of International Journal of Medical Informatics, 2021

• DOI for Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

Prevalence and determinants of serum antibodies to SARS-CoV-2 in the general population of the Gardena valley

Melotti, Roberto; Scaggiante, Federica; Falciani, Michela; Weichenberger, Christian X. et al.

Part of Epidemiology and Infection, 2021

• DOI for Prevalence and determinants of serum antibodies to SARS-CoV-2 in the general population of the Gardena valley
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Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Viberg Johansson, Jennifer; Bentzen, Heidi Beate; Shah, Nisha; Haraldsdóttir, Eik et al.

Part of JMIR Medical Informatics, 2021

• DOI for Preferences of the Public for Sharing Health Data: Discrete Choice Experiment
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Law, Genetics and Genomics: An Unfolding Relationship

Tomasi, Marta; Penasa, Simone; Cozzi, Alessia-Ottavia; Mascalzoni, Deborah

Part of BioLaw Journal - Rivista di BioDiritto, p. 1-5, 2021

• DOI for Law, Genetics and Genomics: An Unfolding Relationship
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Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

Viberg, Jennifer; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate et al.

Part of Technology in society, p. 101625-101625, 2021

• DOI for Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication

Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah

Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, p. 277-287, 2021

• DOI for The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication
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Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

Middleton, Anna; Milne, Richard; Almarri, Mohamed A; Anwer, Shamim et al.

Part of American Journal of Human Genetics, p. 743-752, 2020

• DOI for Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?
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The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks

Staunton, Ciara; Slokenberga, Santa; Mascalzoni, Deborah

Part of European Journal of Human Genetics, p. 1159-1167, 2019

• DOI for The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks
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Microbiota, type 2 diabetes and non-alcoholic fatty liver disease: protocol of an observational study

Motta, Benedetta M.; Grander, Christoph; Gogele, Martin; Foco, Luisa et al.

Part of Journal of Translational Medicine, 2019

• DOI for Microbiota, type 2 diabetes and non-alcoholic fatty liver disease: protocol of an observational study
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Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research

Goisauf, Melanie; Martin, Gillian; Bentzen, Heidi Beate; Budin-Ljösne, Isabelle et al.

Part of PLOS ONE, 2019

• DOI for Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research
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Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

Mascalzoni, Deborah; Bentzen, Heidi Beate; Budin-Ljosne, Isabelle; Bygrave, Lee Andrew et al.

Part of Annals of Internal Medicine, p. 332-334, 2019

• DOI for Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.

Piciocchi, Cinzia; Ducato, Rossana; Martinelli, Lucia; Perra, Silvia et al.

Part of Journal of Community Genetics, p. 177-190, 2018

• DOI for Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.
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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).

Howard, Heidi Carmen; Mascalzoni, Deborah; Mabile, Laurence; Houeland, Gry et al.

Part of Journal of Community Genetics, p. 169-176, 2018

• DOI for How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).
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The challenges of the expanded availability of genomic information: an agenda-setting paper.

Borry, Pascal; Bentzen, Heidi Beate; Budin-Ljøsne, Isabelle; Cornel, Martina C et al.

Part of Journal of Community Genetics, p. 103-116, 2018

• DOI for The challenges of the expanded availability of genomic information: an agenda-setting paper.
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Dynamic Consent: a potential solution to some of the challenges of modern biomedical research

Budin-Ljosne, Isabelle; Teare, Harriet J. A.; Kaye, Jane; Beck, Stephan et al.

Part of BMC Medical Ethics, 2017

• DOI for Dynamic Consent: a potential solution to some of the challenges of modern biomedical research
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The Role of Solidarity(-ies) in Rare Diseases Research

Mascalzoni, Deborah; Petrini, Carlo; Taruscio, Domenica; Gainotti, Sabina

Part of Advances in Experimental Medicine and Biology, p. 589-604, 2017

• DOI for The Role of Solidarity(-ies) in Rare Diseases Research

Reverse Discrimination For Psychiatric Genetic Studies In Population-Based Biobanks

Mascalzoni, Deborah

Part of European Neuropsychopharmacology, 2017

• DOI for Reverse Discrimination For Psychiatric Genetic Studies In Population-Based Biobanks

Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

Budin-Ljøsne, Isabelle; Mascalzoni, Deborah; Soini, Sirpa; Machado, Helena et al.

Part of Biopreservation and Biobanking, p. 241-248, 2016

• DOI for Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?
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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.

McCormack, Pauline; Kole, Anna; Gainotti, Sabina; Mascalzoni, Deborah et al.

Part of European Journal of Human Genetics, p. 1403-1408, 2016

• DOI for 'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research.

Higher cardiogenic potential of iPSCs derived from cardiac versus skin stromal cells

Meraviglia, Viviana; Wen, Jianyan; Piacentini, Luca; Campostrini, Giulia et al.

Part of Frontiers in Bioscience, p. 719-43, 2016

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

Gainotti, Sabina; Turner, Cathy; Woods, Simon; Kole, Anna et al.

Part of European Journal of Human Genetics, p. 1248-1254, 2016

• DOI for Improving the informed consent process in international collaborative rare disease research: effective consent for effective research
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The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results

Pattaro, Cristian; Gögele, Martin; Mascalzoni, Deborah; Melotti, Roberto et al.

Part of Journal of Translational Medicine, 2015

• DOI for The Cooperative Health Research in South Tyrol (CHRIS) study: rationale, objectives, and preliminary results

International Charter of principles for sharing bio-specimens and data

Mascalzoni, Deborah; Dove, Edward S; Rubinstein, Yaffa; Dawkins, Hugh J S et al.

Part of European Journal of Human Genetics, p. 721-728, 2015

• DOI for International Charter of principles for sharing bio-specimens and data
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Development of a pilot project on data sharing among partners of the Italian Hub of Population Biobanks (HIBP): association between lipid profile and socio-demographic variables

Napolitano, Mariarosaria; Santoro, Filippo; Puopolo, Maria; Donfancesco, Chiara et al.

Part of Biopreservation and Biobanking, p. 225-233, 2014

• DOI for Development of a pilot project on data sharing among partners of the Italian Hub of Population Biobanks (HIBP): association between lipid profile and socio-demographic variables

Perspectives on Open Science and scientific data sharing: an interdisciplinary workshop

Bisol, Giovanni Destro; Anagnostou, Paolo; Capocasa, Marco; Bencivelli, Silvia et al.

Part of J ANTHROPOL SCI, p. 179-200, 2014

• DOI for Perspectives on Open Science and scientific data sharing: an interdisciplinary workshop

Practical barriers and ethical challenges in genetic data sharing

Simpson, Claire L; Goldenberg, Aaron J; Culverhouse, Rob; Daley, Denise et al.

Part of International Journal of Environmental Research and Public Health, p. 8383-8398, 2014

• DOI for Practical barriers and ethical challenges in genetic data sharing

Rare disease research: Breaking the privacy barrier

Mascalzoni, Deborah; Paradiso, Angelo

Part of Applied & Translational Genomics, p. 23-29, 2014

• DOI for Rare disease research: Breaking the privacy barrier

Rare diseases and now rare data?

Mascalzoni, Deborah; Knoppers, Bartha Maria; Aymé, Ségolène; Macilotti, Matteo et al.

Part of Nature reviews genetics, p. 372, 2013

Rare diseases and now rare data?

Mascalzoni, Deborah; Knoppers, Bartha Maria; Ayme, Segolene; Macilotti, Matteo et al.

Part of Nature reviews genetics, p. 372-372, 2013

• DOI for Rare diseases and now rare data?

Patientcentricity

Corradetti, Claudio; Mascalzoni, Deborah

Part of Studies in Ethics, Law, and Technology, p. 1-2, 2012

From patients to partners: participant-centric initiatives in biomedical research.

Kaye, Jane; Curren, Liam; Anderson, Nick; Edwards, Kelly et al.

Part of Nature reviews genetics, p. 371-6, 2012

• DOI for From patients to partners: participant-centric initiatives in biomedical research.

Informed consent in the genomics era.

Mascalzoni, Deborah; Hicks, Andrew; Pramstaller, Peter; Wjst, Matthias

Part of PLoS Medicine, 2008

• DOI for Informed consent in the genomics era.

Ethical and social reflections on the proposed European Health Data Space

Staunton, Ciara; Shabani, Mahsa; Mascalzoni, Deborah; Mezinska, Signe et al.

Part of European Journal of Human Genetics, p. 498-505, 2024

• DOI for Ethical and social reflections on the proposed European Health Data Space
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Genetic Testing in Parkinson's Disease

Pal, Gian; Cook, Lola; Schulze, Jeanine; Verbrugge, Jennifer et al.

Part of Movement Disorders, p. 1384-1396, 2023

• DOI for Genetic Testing in Parkinson's Disease
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Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review

Tschigg, Katharina; Consoli, Luca; Biasiotto, Roberta; Mascalzoni, Deborah

Part of European Journal of Human Genetics, p. 1000-1010, 2022

• DOI for Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review
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Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem

Parziale, Andrea; Mascalzoni, Deborah

Part of Frontiers in Psychiatry, 2022

• DOI for Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem
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Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research

Staunton, Ciara; Slokenberga, Santa; Parziale, Andrea; Mascalzoni, Deborah

Part of Frontiers in Genetics, 2022

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The case for open science: rare diseases

Rubinstein, Yaffa R.; Robinson, Peter N.; Gahl, William A.; Avillach, Paul et al.

Part of JAMIA Open, p. 472-486, 2020

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Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues

Gainotti, Sabina; Mascalzoni, Deborah; Bros-Facer, Virginie; Petrini, Carlo et al.

Part of International Journal of Environmental Research and Public Health, 2018

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Recommendations for Improving the Quality of Rare Disease Registries

Kodra, Yllka; Weinbach, Jerome; Posada-de-la-Paz, Manuel; Coi, Alessio et al.

Part of International Journal of Environmental Research and Public Health, 2018

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Collaboration to Understand Complex Diseases: Preeclampsia and Adverse Pregnancy Outcomes

Roberts, James M; Mascalzoni, Deborah; Ness, Roberta B; Poston, Lucilla

Part of Hypertension, p. 681-687, 2016

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Patient centric initiatives (PCIs) - a shift in the governance of science: Lessons from the biobanks world

Mascalzoni, Deborah; Pramstaller, Peter; Corradetti, Claudio

Part of Research Ethics, p. 52-54, 2014

Ethics, Law and Governance of Biobanking: National, European and International Approaches

Mascalzoni, Deborah

Springer, 2015

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