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DIRECTIVE (EU) 2016/680 OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL of 27 April 2016 on the protection of natural persons with regard to the processing of personal data by competent authorities for the purposes of the prevention, investigation, detection or prosecution of criminal offences or the execution of criminal penalties, and on the free movement of such data, and repealing Council Framework Decision 2008/977/JHA Official Journal of the European Union L 119/89 4 May 2016

European Data Protection Board What is the difference between pseudonymised data and anonymised data? (Accessed on 14 November 2025)

Narkhede MR, Wankhede NI, Kamble AM (2025) Enhancing patient autonomy in data ownership: privacy models and consent frameworks for healthcare. Journal of Digital Health 4(1): 1–23

Nwebonyi N, Silva S, de Freitas C (2022) Public views about involvement in decision-making on health data sharing, access, use and reuse: the importance of trust in science and other institutions. Frontiers in Public Health 10: 852971

Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data protection Regulation)

Regulation (EU) 2016/679, Article 4 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data protection Regulation)

Regulation (EU) 2016/679, Article 5 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data protection Regulation)

Regulation (EU) 2016/679, Article 9 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data protection Regulation)

Sugino K (2024) Facilitating informed consent for active patient participation in clinical research. Journal of Clinical Trials 14(3): 1000560

Xu A, Baysari MT, Stocker SL et al. (2020) Researchers’ views on, and experiences with, the requirement to obtain informed consent in research involving human participants: a qualitative study. BMC Medical Ethics 21(1) 93

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Adapting data protection principles for global use > GDPR > Terms relating to personal data protection of patients and people involved in guideline development > Examples of guideline development activities in which data protection principles, including informed consent, apply > Acknowledgements > References >
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