Important information for the participants in the research projects with codes PSI2009-14415-C03-01 and PSI2012-38375-C03-01, conducted between 2009 and 2015 at the Hospital Clínico San Carlos and the Laboratory of Cognitive and Computational Neuroscience (LNCyC) of the Center for Biomedical Technology (CTB).
In 2022, the Center for Cognitive and Computational Neuroscience (C3N) at the Universidad Complutense de Madrid (UCM), formerly LNCyC, joined the eBRAIN-Health project, supported by Horizon Europe and led by Prof. Dr. Petra Ritter (https://ebrain-health.eu/home.html). This project aims to establish a distributed research platform for modeling and simulating complex brain processes, with a particular emphasis on the protection of sensitive data. Additionally, it is linked to the EBRAINS initiative (https://www.ebrains.eu/), an open research infrastructure that centralizes data, tools, and computing facilities for brain research.
The C3N intends to share the data from the aforementioned projects within the eBRAIN-Health framework, with the objective of advancing knowledge on the brain processes associated with Alzheimer’s disease. This data sharing will take place through EBRAINS, ensuring compliance with the General Data Protection Regulation (GDPR) and national law through the signature of the appropriate data-sharing agreements to safeguard the participant’s rights.
This use will be exercised under Article 9(2)(g) of the GDPR. Under the seventeenth additional provision of Organic Law 3/2018, of December 5, on Personal Data Protection and the guarantee of digital rights, the reuse of personal data for health and biomedical research is considered lawful and compatible when, having obtained consent for a specific purpose, the data is reused for purposes or research areas closely related to the scientific field of the original study.
Therefore, in compliance with Article 13 of the GDPR, the intention to reuse this data for the aforementioned purpose is publicly communicated here. Specifically, the participants are informed that:
- They can exercise their right of access, rectification, or cancellation by reaching out the data controller (Fernando Maestú: fmaestuu@ucm.es) or the Data Protection Officer of the UCM (dpd@ucm.es).
- Data will be shared through EBRAINS, following a pseudonymization procedure, and ensuring full compliance with the GDPR. The use of the data will be conducted with technical and functional separation between the research teams and those overseeing pseudonymization, with specific security measures adopted to prevent re-identification and unauthorized access by third parties.
- They may withdraw their consent at any time, without affecting any processing that may have been carried out previously, provided that the exercise of such right does not concern the results of the research.
- The research has the prior favorable report of the Research Ethics Committee.
Finally, the C3N would like to express its gratitude to the participants for their selfless collaboration. It is through contributions like theirs that advancements are achieved in scientific knowledge.