Basic Information on Data Protection
The MICROBiome-based biomarkers to PREDICT decompensation of liver cirrhosis and treatment response (MICROB-PREDICT) research project is a European Union funded research project under the Horizon 2020 Research and Innovation Programme (Ref. 825694).
Here you will find basic information on the processing of your personal data and the exercise of your rights in relation to the MICROB-PREDICT research project, which is aimed to investigate the role of the microbiome in liver disease progression to promote a more personalized treatment of liver disease patients (hereinafter, the “Project”).
More detailed information about the Project and the related agreements between all the Partners and the third parties involved can be obtained upon request contacting the Coordinator, EUROPEAN FOUNDATION FOR THE STUDY OF CHRONIC LIVER FAILURE (EF CLIF), through the following electronic address: dpo[at]efclif.com, and postal address: Travessera de Gràcia 11, 7th floor, 08021 Barcelona – Spain.
General Information of the MICROB-PREDICT European Research Project is available in: https://microb-predict.eu/
1. Data Controllers
The Data Controllers for processing your personal data will be the following entities (hereinafter, “We”, “Our”, (“Us” or the “Partner(s)”), which act as joint controllers, since they jointly decide the purposes of the processing and what means are to be used.
Data protection officer
The Data Protection Officer (DPO) of the Coordinator of the Project (EF CLIF) will be the point of contact for all privacy related aspects of the Project and will be at your disposal for any doubts, queries or issues you may have in relation the processing and protection of your personal data within the scope of the Project. You may contact the DPO through this email address: dpo[at]efclif.com or this Company’s address: Travessera de Gràcia 11, 7th floor, 08021 Barcelona – Spain.
2. Data sources and processing purposes
Personal data are from patients and healthy volunteers collected via: (i) previous studies (cohorts) related to liver diseases; and (ii) a new Clinical Trial carried out by the Partners that are part of the MICROB-PREDICT research Consortium.
The personal identification data of the Data Subjects (such as name and surname) will only be accessed by the Partners that recruited them and codified. The rest of the Partners will have exclusive access to pseudonymized data, so that they will not be able to identify individuals.
The processing of the personal data collected will be used with the objective of better understanding the role of the microbiome in hepatological diseases and develop biosensors that can support a more personalized healthcare of liver disease patients. Afterwards, in the Clinical Trial, the Personal Data from participants will be used to test the treatment(s) discovered during the Project.
Personal data may be further used for scientific research purposes, and data and research results of the Project may be published, only if appropriate safeguards are in place. No personal information revealing the identity of participants will be published.
3. Legal basis
The legal basis for the processing of data in the previous studies part of MICROB-PREDICT is the informed consent provided by participants for using the participants’ Pseudonymized Data, including the personal data associated to their biological samples.
Regarding Personal Data collected in the new Clinical Trial the legal basis will be:
(i) the ‘public interest’ when the Partner are public entities (e.g., universities and research institutes), while the processing of special categories of data (such as health data) is legitimated for reasons of public interest in the field of public health; and
(ii) the ‘legitimate interests’ of the Partners which are not public entities to carry out research projects, while the processing of special categories of data (such as health data) in this case is legitimated the processing is necessary for a scientific purpose regulated by the biomedical research regulations and it is performed with all safeguards in place. Additional information regarding the balancing test carried out in order to verify the existence of a legitimate interest pursued by MICROB-PREDICT Project can be obtained upon request to the DPO of the Coordinator of the Project (EF CLIF) at the following email address: dpo[at]efclif.com.
4. Assignments and Data transfers
Your personal data will not be communicated to third parties outside the MICROB-PREDIT Partners, except in the case we will be legally required to do so or when required by a public authority, the justice administration, or data protection supervisory authorities in compliance with legal obligations applicable to us.
Regarding the United Kingdom, where some of our Partners are from, it is considered to be a country with an adequate level of protection in relation to privacy according to the Adequacy Decision issued by the European Commission the 28th of June 2021. On the other hand, EMBL is an intergovernmental organization, so the transfers of data to this Partner rely on Article 49(1)(d) of the GDPR.
We also use the services of service providers, such as BIOBYTE, which provides us with storage and cloud services. These providers have limited access to the Personal Data for the provision of their service, acting as Data Processors. In these cases, we guarantee that we have signed specific agreements with such service provider as required by law, in which they are required to have the same or a higher level of security to protect the information provided to them.
5. Data Protection Rights
As a Data Subject, you have the right to obtain confirmation as to whether your personal data is being processed by the Partners, as well as access to them or request their correction or deletion when they are incomplete or if they are no longer necessary for the purpose for which they were collected. You may also withdraw your consent to any processing based on this at any time and, when appropriate, request data portability to receive your personal data in a structured format, commonly used and readable by any electronic device. In certain cases, you will also have the right to request the restriction of the processing of your data or to object it.
To exercise the above rights, you must send a communication to the DPO of EFCLIF, which will be the point of contact for the exercise of data subject rights for the MICROB-PREDICT Project, in the following e-mail address: dpo[at]efclif.com or EF CLIF’s postal address: Travessera de Gràcia 11, 7th floor, 08021 Barcelona – Spain.
Any claim we receive will be resolved as soon as possible, always in compliance with the deadlines established by law. Depending on the Partner who collected your data or the study from which it was obtained, your request may be forwarded to the appropriate persons.
In any event, you will be entitled to file a complaint with your national data protection authority in defense of your data protection rights.
6. Information Security
All Personal Data collected and generated in the context of this Project will be securely stored into a central web-based database (the “Data Hub”) provided by the service provider BYOBITE and made available to the Partners through controlled and secure access. The Data Hub complies with international standards for data protection and information security. Strict measures will be taken to ensure that all such data will be pseudonymized and, in sum non-identifiable.
Download BASIC INFORMATION ON DATA PROTECTION OF THE MICROB-PREDICT PROJECT (PDF | 149 KB)