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FrAmework for ClInicaL trIal participants daTA reutilization for a fully Transparent and Ethical ecosystem

CORDIS provides links to public deliverables and publications of HORIZON projects.

Links to deliverables and publications from FP7 projects, as well as links to some specific result types such as dataset and software, are dynamically retrieved from OpenAIRE .

Deliverables

Ethical standards and guidelines No. 2

Ethical standards and guidelines

Consortium handbook

Consortium handbook to provide important information about the structure of the project the governing structure relevant tools for financing and managing activities

Ethical framework

Ethical framework first draft for the return of trial data to patients and stakeholder informed strategies for the secondary use of data

Report of the stakeholders involvement plan results No. 2

Report of the stakeholders involvement plan results, periodic report concerning the archived results of the activities

Expert Decision Committees establishment and management rules

Expert Decision Committees establishment and management rules to define the rules of each Committee and its composition

Communication, dissemination, and exploitation plan

Communication dissemination and exploitation plan detailed plan where to define the strategy according to EU rules

Report on stakeholders' needs and potential barriers

Report on stakeholders’ needs and potential barriers for adoption of the process and associated tools developed through the FACILITATE project

Report of the stakeholders involvement plan results No. 3

Report of the stakeholders involvement plan results, periodic report concerning the archived results of the activities

Ethical standards and guidelines No. 1

Ethical standards and guidelines

Report of the stakeholders involvement plan results No. 1

Report of the stakeholders involvement plan results periodic report concerning the archived results of the activities

Scientific Advisory Board establishment and management rules

Scientific Advisory Board establishment and management rules, to define the rules of the Board and its composition

FACILITATE Website

FACILITATE Website to define the structure of the website

Publications

The nexus of social alliances and diverse moral domains: a bedrock for participatory clinical research

Author(s): Johanna M. C. Blom, Veronica Rivi, Fabio Tascedda and Luca Pani
Published in: Frontiers in Medicine, Issue 10:1250247; 02 October 2023 Sec. Regulatory Science Volume 10 - 2023, 2023, Page(s) 01-04, ISSN 2296-858X
Publisher: Frontiers
DOI: 10.3389/fmed.2023.1250247

Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process

Author(s): Deborah Mascalzoni; Roberto Melotti; Cristian Pattaro; Peter Paul Pramstaller; Martin Gögele; Alessandro De Grandi; Roberta Biasiotto
Published in: European Journal of Human Genetics, Issue Eur J Hum Genet 30, 1391–1397 (2022). https://doi.org/10.1038/s41431-022-01160-4, 2022, Page(s) 1391–1397, ISSN 0967-0912
Publisher: Institute of Materials
DOI: 10.1038/s41431-022-01160-4

Ethical and social reflections on the proposed European Health Data Space

Author(s): Ciara Staunton, Mahsa Shabani, Deborah Mascalzoni, Signe Mežinska and Santa Slokenberga
Published in: European Journal of Human Genetics, Issue 32, pages 498–505 (2024), 2024, Page(s) 498-505, ISSN 1018-4813
Publisher: Natue Publishing Group
DOI: 10.1038/s41431-024-01543-9

Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants

Author(s): Ciara Staunton, Johanna M. C. Blom, Deborah Mascalzoni, null null
Published in: Frontiers in Medicine, Issue 11, 2024, Page(s) 01-08, ISSN 2296-858X
Publisher: Frontiers
DOI: 10.3389/fmed.2024.1408600

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

Author(s): Roberta Biasiotto, Jennifer Viberg Johansson, Melaku Birhanu Alemu, Virginia Romano, Heidi Beate Bentzen, Jane Kaye, Mirko Ancillotti, Johanna Maria Catharina 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 Masca
Published in: JOURNAL OF MEDICAL INTERNET RESEARCH, Issue J Med Internet Res 2023, vol. 25, e47066, 2023, Page(s) 01-16, ISSN 1438-8871
Publisher: Journal of medical Internet Research
DOI: 10.2196/47066

Need for Speed: Leveraging the Power of Functional Encryption for Resource-Constrained Devices

Author(s): Eugene Frimpong, Alexandros Bakas, Camille Foucault and Antonis Michalas
Published in: Cryptology ePrint Archive, Paper 2024/231, 2024, Page(s) 13
Publisher: Cryptology ePrint Archive

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