Transparency portal
Transparency portal
Your personal data
You have participated in a research study sponsored by INI-CERAH and you would like to know more about the management of your personal data and their possible reuse, this page is designed to answer your questions.
You can contact the investigator who has taken charge of you (his contact details are on the information leaflet you have received) or the data protection officer for any complaint or to exercise your rights.
What is the legal basis and purpose of the processing of your personal data?
The processing of your personal data is based on the public interest mission of INI-CERAH. It is carried out in accordance with Articles 6 and 9.2.J of the European Data Protection Regulation 2016/679 (GDPR). The processing of your data is necessary to carry out scientific research, with the aim of advancing knowledge in the field of motor performance and prevention of musculoskeletal disorders and improving medical management or assistive products.
Only the data strictly necessary for the research is collected (anthropomorphic characteristics, health data characterizing your pathology: etiology and anamnesis, scores obtained in locomotion tests, etc.).
How is the confidentiality of your personal data ensured and how will your data be processed?
Your personal data is pseudonymized: that is, you are identified by an alphanumeric code.
The information concerning your identity (name, first name, contact information) is only known to the medical team and/or the investigator who has taken charge of you. Your identity may also be known to the data protection officer if you contact him, and, if necessary, the persons carrying out the quality control of the research mandated by the sponsor or the health or control authorities. All these persons are subject to professional secrecy.
Your pseudonymized data will then be used for the purposes of the research, with the aim of advancing knowledge in the field of motor performance and prevention of musculoskeletal disorders and improving medical management or assistive products.
Unless you object, the data collected in the context of your care or previous research, once pseudonymized, may be reused in the context of projects whose promoter is the INI-CERAH (data controller : INI's Inspector General), or to populate an anonymized database that will be used to conduct multiple research projects.
For more information about ongoing research, or about projects that may use data collected in your care or in previous research, visit the current or completed studies.
What are your rights regarding your personal data?
You have the right to access your data, through the investigator, and to request that it be corrected or completed if necessary.
In this case, you can also ask the controller to restrict the processing of your data (i.e., ask the sponsor to temporarily freeze the use of your data) if you believe your personal data is inaccurate.
Even if you have agreed to participate in research and possibly to the re-use of your data and/or to their use to populate a database for research purposes, you may at any time object to the processing of your data and may also exercise your right to erase data already collected. However, anonymized medical data collected prior to the withdrawal of your consent may not be erased and may continue to be processed under the conditions provided for by the research if this would make it impossible or would seriously compromise the achievement of the objectives or the quality of the research.
How to exercise your rights?
You can exercise your rights at any time, without having to justify yourself, and without prejudice to the quality of your care.
The data controller Mr. Inspector General, Director of the establishment, as they do not have access to your identity, it is recommended that you first contact the investigator who took charge of you, whose contact information is available in the information note that was given to you when you first participated in research.
You may also, if you wish, exercise your rights with the Data Protection Officer of the sponsor who will manage this request in coordination with the investigators involved in the study. In this case, your identity (first name, last name) will be made available to the sponsor's data protection officer.
Even if you have agreed to participate in research and possibly to the re-use of your data and/or to their use to populate a database for research purposes, you may at any time object to the processing of your data and may also exercise your right to erasure.