You are a participant in the NS-PARK cohort: your data will be used to meet the objectives of the cohort, as well as the objectives of the research associated with the cohort, described on this site in the section Ongoing Analyses and related projects.
Confidentiality and controller of your personal data
In the context of the NS-PARK cohort, your personal data are processed to enable the results of the research to be analyzed. This processing is placed under the responsibility of INSERM (101 rue de Tolbiac, 75 013 Paris - https://www.inserm.fr/), in its capacity as research promoter. The personal data described to you when you registered for the study, collected during your visits, are transmitted to the coordinating investigator of the research (Pr Jean-Christophe Corvol) or to persons acting on behalf of INSERM, as explained in your information form and according to the circuit described below, throughout which the confidentiality of the data is strictly ensured in accordance with the regulations in force.
Circuit of your data
- Data collection by the neurologist (or other research professional, for example neuropsychologist) as part of the usual follow-up, directly on the secure database of the cohort.
- Data hosting on servers approved for health data at the ICM in Paris (Brain and Spinal Cord Institute).
- Data extraction for analysis: the data are extracted by the Center of pharmacoepidemiology of the AP-HP Department of Public Health (Hôpital Pitié-Salpêtrière, statistical team of the cohort), and analyzed under the control of the manager and promoter, INSERM, by the teams affiliated with the research project
- Data storage: the data are kept in the information systems of the controller, the center in which you were included and the coordinating investigator for 15 years from the start of the research (2nd quarter of 2021). The data will then be archived for a period of time in accordance with the regulations in effect (currently 15 years).
Life cycle of your data
- Health data (medical history, data related to medical care...)
| Objective of the research | Data recipients | Duration of data storage in active database |
| To describe the natural history of Parkinson's disease, its progression, the response to treatment | Staff in charge of research and analysis (about 15 people), specifically authorized and trained in research, under the responsibility of the coordinating investigator (Pr Jean-Christophe Corvol) | 15 years in active base to answer study objectives and archived for 15 years |
- Biological samples and data required for sample processing
| Objective of the research | Data recipients | Duration of data storage in active database |
| Identify clinical and biological markers associated with disease progression and response to therapy | Staff in charge of research and analysis (about 15 people), specifically authorized and trained in research, under the responsibility of the coordinating investigator (Prof. Jean-Christophe Corvol) | 15 years in active base to answer the objectives of the study and archived for 15 years |
- Genetic data from biological samples
| Objective of the research | Data recipients | Duration of data retention in active database |
| To identify clinical and biological markers associated with disease progression and response to treatment | Staff in charge of research and analysis (about 15 people), specifically authorized and trained in research, under the responsibility of the coordinating investigator (Prof. Jean-Christophe Corvol) | 15 years in active base to answer study objectives and archived for 15 years |
Information and objection procedures
You are participating in the NS-PARK cohort: your data will be used to satisfy the objectives of the cohort itself, as well as the objectives of the research associated with the cohort, described on this site in the Current Analyses section.
The agreement or the opposition to participate in this research does not change your care.
You can at any time:
- Inform you about the use of your data via this site
- Exercise your right to opt out of the cohort
- Oppose the inclusion of your data in one or more analyses
- Request access to your personal data and rectify it if necessary
To do so, you need to contact the NS-PARK cohort referral staff at your follow-up center. This person is part of the medical team through which you were included in the study and will be able to inform you and update your file according to your request.
However, if you encounter any difficulties in exercising your rights, you can contact our Data Protection Officer (DPO), by email (dpo@inserm.fr) or by mail (Délégué à la Protection des Données de l’INSERM, 101 rue de Tolbiac, 75 013 Paris).
Summary of resource contacts for exercising your rights
The data controller assumes responsibility for the research
In the case of the NS-PARK cohort, this is the National Institute of Health and Medical Research (Inserm)
How to contact Inserm?
101 rue de Tolbiac
75013 Paris
You can exercise your rights with the person responsible for implementation of data.
In this case, it is the investigator or his or her designated representative who is following you in the research and who knows your identity
In the event of difficulties in exercising your rights, you can contact the Inserm DPO.
How to contact him?
101 rue de Tolbiac 75013 Paris
If needed or to submit a claim, the control authority to contact is the Commission Nationale de l'Informatique et des Libertés (CNIL)
How to contact CNIL ?
3 place Fontenoy
TSA 80715
75334 Paris Cedex 07
