Information for patients and family members

This communication is addressed to individuals who participated in the research projects 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).
Currently, the Center for Cognitive and Computational Neuroscience (C3N) at the Complutense University of Madrid (UCM) (formerly known as LNCyC) is participating in the eBRAIN-Health project, funded by Horizon Europe and integrated into the European research infrastructure EBRAINS. Within this framework, the C3N plans to reuse and share, in a controlled manner, the personal data collected in the aforementioned projects, exclusively for biomedical research purposes related to cognitive impairment and Alzheimer’s disease, including the application of new analytical methods within this research area.

Legal basis of treatment

The processing is based on Article 6.1.e of Regulation (EU) 2016/679 (GDPR), as it is carried out within the framework of a task performed in the public interest, pursuant to the seventeenth additional provision of Organic Law 3/2018 (LOPDGDD). Since special categories of personal data are included, Article 9.2.j of the GDPR also applies, in conjunction with Article 89.1, with the adoption of the corresponding technical and organizational safeguards.
The reuse of the data is considered compatible with the original purpose pursuant to Article 6.4 of the GDPR, as it remains within the same field of biomedical research, uses the same type of data, and applies measures that limit the risks to the rights and freedoms of the data subjects.

Information for interested parties

In accordance with Article 13 of the GDPR and Additional Provision Seventeen, section 2.c), of the LOPDGDD, this reuse is hereby publicly announced, as providing individual information is impractical after the time that has elapsed.

Specifically, please note that:

• A technThe data controller within Complutense University is Fernando Maestú (fmaestuu@ucm.es), Professor of Cognitive Neuroscience (Department of Experimental Psychology, Cognitive Processes and Speech Therapy), to whom the rights of access, rectification, erasure, restriction of processing, and objection may be exercised, insofar as they are applicable to scientific research, pursuant to Article 89 of the GDPR.
• Interested parties may also contact the UCM Data Protection Officer at: dpd@ucm.es.
• The data will be processed in pseudonymized form, under strict security measures, including the technical and functional separation between the research teams and those responsible for pseudonymization, to prevent re-identification and unauthorized access. Furthermore, the personnel involved in the project undertake an express commitment to confidentiality and to refrain from any re-identification activities.
• Data will only be shared through exchange agreements that establish appropriate legal, technical, and organizational safeguards and limit its use to biomedical research purposes.
• Data subjects may object at any time to the processing of their personal data obtained within the framework of the original projects, without this affecting processing already carried out.
• The reuse of data has received a favorable report from the Ethics Committee of the San Carlos Clinical Hospital.
• Data subjects have the right to file complaints with the Spanish Data Protection Agency, either through its website or at its address: Calle Jorge Juan nº 6, 28001 Madrid, Spain.

This communication aims to guarantee transparency in the processing and respect for the rights of the participants, in accordance with current data protection regulations.

Virtual Brain Cloud (826421) is a project related to the research topic “neurodegenerative diseases and early biomarkers”, carried out by the Cognitive and Computational Neuroscience Laboratory with other important European Institutions.

It is the intention of the Laboratory to use within the framework of this project a part of the health data collected during the following two projects, carried out during the years 2009-2015:

• “Aproximación multidisciplinaria al diagnóstico precoz de la enfermedad de Alzheimer: conectividad neurofuncional, neuropsicología y perfiles genéticos” (PSI2009-14415-C03-01).
• “Entendiendo las quejas de memoria en el envejecimiento: una aproximación desde la genética, la neuropsicología y la conectividad anatomo-funcional” (PSI2012-38375-C03-01).

The data will be used in accordance with the personal data protection measures imposed by European and national regulations (GDPR and LOPDGDD):

• Pseudonymization and defacing: identification features are not included in the processed health data (neither the subject’s name, nor her facial features);
• Access to data by researchers requires electronic authentication of the same, and the data transfers are automatically mapped and saved in an electronic record.

In accordance with the seventeenth additional provision of Spanish Organic Law 3/2018, of December 5, (protection of personal data and guarantee of digital rights), the use of pseudonymised personal data for health and, in particular, biomedical research purposes is considered lawful. The use of pseudonymised personal data for public health and biomedical research purposes will require:

• A technical and functional separation between the research team and those who carry out the pseudonymization and keep the information that makes re-identification possible;
• That the pseudonymised data are only accessible to the research team when:

The data may be re-identified at its source, when, as a result of an investigation that uses pseudonymised data, the existence of a real and concrete danger to the safety or health of a person or group of people, or a serious threat is appreciated for your rights or is necessary to guarantee adequate sanitary assistance.
The multitude of participants and the difficulty (sometimes impossibility) of contact on our part with the participants make the effort to communicate with everyone not a viable option. In any case, for more information about the study we remain at your disposal at the following email: fmaestuu@ucm.es
Participants can exercise their rights of access, rectification or cancellation by contacting the person responsible for the treatment, Fernando Maestú (fmaestuu@ucm.es) or the Data Protection Officer of the UCM (dpd@ucm.es).

The use of the data will end in November 2022, when the Virtual Brain Cloud project ends. Any new information in this regard will be communicated through this page.

Thanks again for your participation.
The Laboratory of Cognitive and Computational Neuroscience.