This Privacy Notice will inform you as to how the TrialsNet Consortium (hereinafter referred to as the “Consortium”, “we”, “us” and “our”) collects and processes information about you and in particular your personal data. We hereby assure you that this Privacy and Personal Data Protection Policy (“Policy”) fully respects and complies with EU Regulation 679/2016 (“Regulation”) and any other relevant legislation.
The processing of personal data, such as name, address or e-mail address of a data subject shall always be in line with the General Data Protection Regulation (GDPR), and in accordance with the country-specific data protection regulations applicable to the TrialsNet Consortium. Through this data protection declaration, we would like to inform anyone concerned and the general public of the nature, scope, and purpose of the personal data we collect, use and process. Furthermore, data subjects are informed, by means of this data protection declaration, of the rights to which they are entitled.
As the data controller, the TrialsNet Consortium has implemented numerous technical and organizational measures to ensure comprehensive protection of personal data processed through this website.
Personal Data is any information relating to an identified or identifiable natural person (‘data subject’); an identifiable natural person is one who can be identified, directly or indirectly, indicatively by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.
Personal data breach is a breach of security leading to the accidental or unlawful destruction, loss, alteration, unauthorised disclosure of, or access to personal data transmitted, stored or otherwise processed.
Controller is the natural or legal person, public authority, agency or other body which, alone or jointly with others, determines the purposes and means of the processing of personal data.
Processor is a natural or legal person, public authority, agency or other body which processes personal data on behalf of the controller.
Processing is any operation or set of operations which is performed on personal data or on sets of personal data, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.
Third Party is a natural or legal person, public authority, agency or body other than the data subject, the controller, the processor and persons who, under the direct authority of the controller or processor, are authorised to process personal data.
Consent of the data subject is any freely given, specific, informed and unambiguous indication of the data subject’s wishes by which he or she, by a statement or by a clear affirmative action, signifies agreement to the processing of personal data relating to him or her.
Regarding the personal data in cases where as a Project Consortium, we determine the purposes and means of the processing, the Data Controller is the TrialsNet Consortium.
Principles we adhere to
At TrialsNet Consortium, we are committed to and adhering to the following principles of processing personal data in accordance with Article 5 of the Regulation. The personal data is:
- processed lawfully, fairly and in a transparent manner in relation to the data subject (principle of ‘lawfulness, fairness and transparency’);
- collected for specified, explicit and legitimate purposes and not further processed in a manner that is incompatible with those purposes (principle of ‘purpose limitation’);
- adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed (principle of ‘data minimisation’);
- accurate and, where necessary, kept up to date; we take every reasonable step to ensure that personal data that is inaccurate, having regard to the purposes for which it is processed, erased or rectified without delay (principle of ‘accuracy’);
- kept in a form which permits identification of data subjects for no longer than it is necessary or as required by relevant Laws (principle of ‘storage limitation’);
- processed in a manner that ensures appropriate security of the personal data, including protection against unauthorised or unlawful processing and against accidental loss, destruction or damage, using appropriate technical and organisational measures (principle of ‘integrity and confidentiality’). Finally, we are able to demonstrate compliance with the aforementioned principles (principle of ‘accountability’).
Collection of Personal Data
The TrialsNet Consortium as the Data Controller collects Personal Data from you within the purposes of research and the project’s scope. So, in the following cases:
- When you contact us directly or indirectly (e.g. through the project’s webpage and/or e-mail, or through our partners, or through our Social Media pages, etc.), in order to be informed regarding the Project or ask for relevant information;
- If you fill in any of our documents or subscribe to our newsletter;
- TrialsNet Consortium may also publish video or photographs of images in case of events or workshops, provided that the relevant data subject gave its consent to the publication of it. There is no transfer of this personal data to third parties outside the same TrialsNet Consortium.
Minors’ Personal Data
We do not collect or process minors’ personal data without verifiable parental consent in cases when we are able to control it. For example, it is not possible to control information that is communicated to us online. In any event, if we find that we have collected any personal information from a minor without verifiable parental consent (in accordance with Article 8 of the Regulation), we will immediately delete the information from our records. If you believe we may have collected information from a minor, please contact us.
Categories of Data Subjects
The categories of data subjects include:
- Partners of the Consortium.
- Users visiting the project website.
- Social Media users.
- TrialsNet Platform users.
- General Public.
Kind of Personal Data we may collect about you
Data from the following categories of personal information about you may be collected and processed per case in order to serve the purpose of the data collection and in accordance with the relevant legal basis as described in this Policy:
- Contact details with you or a natural person you may indicate instead of you (name, surname, address, telephone or fax number, email);
- Occupational information (occupation, position);
- Incident investigation data, such as incident details, data of persons involved or related information;
- Information required by the institutional framework such as personal data of persons depended or related to our Consortium members;
- Apps/websites/social media related data (cookies, full name or nickname, information you publicly disclose and comments on social media, or email attachments);
- Your picture when attending our events, or your photo is uploaded on our social media or website and of course in both cases under your consent.
Purposes of Processing & the Legal Basis of Data Processing
The processing of personal data is based on one of the “legal basis” as referred to in Article 6 of the Regulation (or Article 9 in case of special categories of personal data).
The legal basis on which the collection and processing of personal data is based (in most of the cases) are, the consent, the compliance in performing our contractual obligations, the compliance with our legal and statutory obligations, and the safeguarding our legitimate interests. For special categories of personal data, the explicit consent, the performance of obligations and the exercise of specific rights of the controller or data subject in the field of labour law and social security/social protection law and for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment. The legal basis, on which the processing of your personal data is based, is as follows for each processing purpose:
Consent: when you communicate with us in any way directly or indirectly as interested in our project, when you fill in our documents, when informing you about our findings in the context of our dissemination activities, when you make a complaint or statement or when assessing us, when participating in our events, when you visit our social media accounts, or when you give us your business card.
Commitment to perform our contractual obligations: when you have agreed to receive our newsletter.
Compliance with our legal obligations: to comply with our legal obligations to all sorts of authorities such as labour law, regulatory authorities, tax, accounting, auditing, judicial authorities and agencies or in connection with our contractual obligations or during payment of our liabilities.
Safeguarding our legitimate interests: to improve our services, or when investigating and managing any potential incident, or for the assessment of persons and situations.
The Consortium is informed about the processing purposes and the legal bases under specific documents internally.
Retention of Data Period
We store personal data for as long as it is required by the respective processing purpose and any other permitted linked purpose always within the projects scope on completion of the project the data shall be stored until completion of the project.
Cookies are stored depending on their nature as you may be informed in our cookies policy linked to the present policy (please see below).
Personal data you disclose to us as users are stored for until the completion of the project.
Data that may be needed for our legitimate interests as a Controller shall be kept until the reason for storing such data ceases.
Specifically, for the data we process based on your consent (as an example for marketing), these are kept from obtaining the consent until it is revoked or there is no longer need to store it.
Information that is no longer necessary is safely destroyed or anonymised. We limit access to your personal data to those partners who need to use it for the specific purpose.
How we ensure the security of Personal Data
We have received reasonable organizational and technical measures to protect the personal data we collect, and in particular any specific categories of personal data. We follow international standards and practices to ensure the security of our networks. We ensure you that your personal data is processed securely and legally, by adhering to policies and developing and implementing procedures in accordance with the purposes and legal bases of processing. For example, the following security measures are used to protect personal data against unauthorised use or any other form of unauthorised processing:
- Access to personal data is restricted to a limited number of authorised partners as per project structure and under the Data Management Plan and Ethics requirements.
- Our repository system of Microsoft Teams, used for the processing of personal data, all technical measures are taken to prevent loss, unauthorised access or other illegal processing.
In addition, access to these ICT (Information communication technology) systems is monitored on a permanent basis in order to detect and prevent illegal use at an early stage. Although the transfer of data through the Internet or a web site cannot be guaranteed to be protected from cyberattacks, we work to maintain physical, electronic and procedural security measures to protect your data.
Some of the security measures we take are not announced for obvious reasons.
To whom the Data may be disclosed
We take measures to ensure that the recipients of personal data are kept to a minimum. The personal data we collect are disclosed to third parties, provided that the legality of such disclosure is fully justified. Specific personal data from those we lawfully collect as a Controller, may be accessed (or disclosed) on a case-by-case basis by:
- Any relating supervisory authority within its role;
- Any public or judicial authority where required by law or judicial decision.
- The auditor of the company, for necessary data according requirement (financial, employment, contracts and other controls), under confidentiality.
- The advocate, for whatever data is required in legal cases, under confidentiality.
- The Insurance cooperating company and only for the relevant part of the information.
- Partners’ banks (of the company, the staff or affiliates and suppliers), only for payment related data.
- The training or systems consultants, the trainer, for training or systems control issues and only for the necessary pieces of information and data.
The personal data we collect is processed within the European Economic Area (EEA).
Your rights as a Data Subject and how you can exercise them
You have the right to be informed, the right of access to your personal data, the rights of rectification and erasure (in cases it is permitted), the right to restriction of processing, the right to data portability, the right to object. If processing is based on your consent you may withdraw it at any time.
The right to be informed is exercised through this privacy and personal data protection notification. In some cases, it is also mentioned in documents – forms we are using.
We inform you that we are not using software of decision making solely based on automated processing including profiling.
Right of access: you have the right to obtain from us confirmation as to whether or not your personal data is being processed as well as other relevant information, and, where that is the case, access to your personal data.
Right of rectification: you have the right of rectification of your inaccurate personal data as well as to have incomplete personal data completed by providing a supplementary statement.
Note: Since it is not possible for us to be aware of any changes to your personal data if you do not inform us, please help us keep your information accurate by informing us of any changes to your personal information we do process.
Right to erasure (‘right to be forgotten’); we have to answer such right when:
- your personal data is no longer necessary in relation to the purposes for which we collected it;
- withdraw your consent on which the processing is based and where there is no other legal basis for the processing;
- your personal data has been unlawfully processed;
- personal data has to be erased for compliance with a legal obligation we are subject to;
- personal data has been collected in relation to the offer of information society services.
We reserve the right to refuse this right if the processing is necessary for compliance with any legal obligation, we are subject to, or for reasons of public interest, or for the foundation and exercise or support of our legal claims (according to Article 17 § 3).
Right to restriction of processing; you have the right to restriction of processing when:
- you contest the accuracy of your personal data for a period enabling us to verify the accuracy of the personal data;
- the processing is unlawful and you oppose the erasure of the personal data and request the restriction of their use instead;
- we no longer need your personal data for the purposes of the processing, but it is required by you for the establishment, exercise or defence of legal claims;
- you objected to processing pending the verification whether our legitimate grounds override those of yours.
Right to data portability: You have the right to receive your data in a structured, commonly used and machine-readable format and under an explicit request such data to be transferred to both, you and another natural or legal person who will process it.
Right to object: you have the right to object to the processing of your data at any time when the reason for the processing relates to direct marketing.
In the event that you make such request in a written or electronic form regarding any of the above rights, we will assess your request and respond within one month of its receipt, either for its satisfaction or to provide you with objective reasons preventing it from being satisfied, or, given the complexity of the request and the number of requests at the given time, request an extension of response for a further two months period (according to Article 12.3 of the Regulation).
The exercise of your rights is free of charge. Where requests from you are manifestly unfounded or excessive, in particular because of their repetitive character, we may refuse to answer or charge you an administrative fee.
If you are dissatisfied with the use of your data by us, or our response after exercising your rights, you have the right to lodge a complaint with a supervisory authority.
Personal Data Breach
In the event of a breach of the security and integrity of the personal data processed, we will take the following measures (in accordance with Article 33 and 34 of the Regulation in case we are the Controller) and we will:
- Assess it in order to implement the appropriate procedures needed to limit the breach;
- Examine the extent of the breach and the sensitivity of the data included;
- Evaluate the risk and its impact on your rights and freedoms;
- Endeavour to reduce as much as possible the damage that is or may be caused;
- Notify within a time limit of 72 hours of becoming aware of the breach, the National Personal Data Protection Authority, if required;
- Assess the impact on your privacy and take appropriate measures to prevent the repeating of the incident.
In the event we are the processor, we will inform the Controller as soon as possible.
Links to other Websites
By following this link, you will be informed on our cookies policy.
Contact details with the Data Protection Authority
Additional information and terminology for the Regulation can be found at https://eur-lex.europa.eu/legal-content/EL/TXT/?uri=celex%3A32016R0679.
If at any time you want to contact us or make a request regarding your rights or any other matter relating to the protection of personal data you may contact the project’s email: firstname.lastname@example.org
This policy is effective from 01/01/2023 and will be reviewed when there is a significant change. This review will be available on our website.
Last update: current date 01/01/2023.