The PERMIT website is managed by the European Clinical Research Infrastructure Network (ECRIN). It is a central resource for information about the PERMIT project and information about personalised medicine, as relevant to the project.
Although you can consult the PERMIT website without giving any personal information, in some cases your personal data is required (e.g. in case you would like to sign up to receive emails about the project via the sign-up bar in the footer).
Our policy on protection of individuals with regard to the processing of personal data is based on the principles set out by the by the Regulation (eu) 2018/1725 of the European parliament and of the Council of 23 October 2018 on the protection of natural persons with regard to the processing of personal data (the GDPR) as well as the relevant French law, as applicable.
This policy covers how ECRIN processes your data on the PERMIT website.
2. WHAT PERSONAL DATA DO WE COLLECT ABOUT YOU?
The following personal data might be required when you sign up to receive PERMIT emails:
First name, Last name, Email address
3. FOR WHAT PURPOSE DO WE COLLECT YOUR DATA?
Any collection and processing of personal data on our website is for one of the following defined purposes:
- To send you emails regarding the PERMIT project (news/updates, events, publications, etc.)
- To measure the effectiveness and efficiency of our website.
Specific information for each of the above purposes is detailed below.
4. DO WE PUBLISH YOUR DATA ON THIS WEBSITE?
ECRIN does not publish any of your personal data on the PERMIT website, unless you have specifically provided your consent for a given purpose (e.g. publication of names/functions of individuals involved in activities, authors on a publication).
5. ON WHAT GROUNDS DO WE PROCESS YOUR DATA?
As a general rule, we process your personal data on the basis of your CONSENT to ECRIN's processing of your personal data.
In some cases, we could consider other lawful bases such as the legitimate interest of ECRIN. In this case, we will carefully consider your rights and obligations and we will inform you about your data protection rights by adequate means.
6. WHERE DO WE STORE YOUR DATA?
All information provided by you is gathered securely through the SSL (SecureSockets Layer). A SSL is a protocol that encrypts your information into codes so that your information is kept secure while being transmitted via the Internet.
7. WHO HAS ACCESS TO YOUR DATA?
ECRIN’s relevant internal parties.
For instance, ECRIN’s Communications Officer has access to the data that you provide via the email sign-up.
We never pass on, sell or swap your data for marketing purposes to other third parties outside ECRIN.
In case we use a service provider for certain data processing, we will disclose this information in the specific data policy and, as applicable, in the information notice so that you can make an informed decision about using our tools.
8. HOW LONG WILL WE RETAIN YOUR PERSONAL DATA?
ECRIN will retain and process your personal data for as long as it deems relevant, and subject to applicable law, to fulfil the purpose(s) for which the data were collected. After such time, ECRIN will delete your personal data.
9. WHO IS RESPONSIBLE FOR THE PROCESSING OF YOUR DATA ON OUR WEBSITE?
ECRIN acts as the data controller of the processing of your personal data for the purposes stated above. In case ECRIN acts as a joint controller or a data processor, we will inform you via the information notice or other adequate means.
DATA CONTROLLER: EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK (ECRIN)
5 rue Watt
Registration number: 801 933 235
10. WHAT ARE YOUR RIGHTS?
ECRIN will ensure that you can exercise your rights pertaining to your personal data.
To that end, ECRIN informs you that you are entitled:
a) to have access, upon simple request, to your personal data – in which case you may receive a copy of such data (if requested)
b) to obtain a rectification of your personal data should your personal data be inaccurate, incomplete or obsolete ("right to rectification")
c) to obtain the deletion of your personal data ("right to be forgotten");
d) to withdraw your consent to the data processing (where your personal data has been collected and processed on the basis of your consent);
e) to request a limitation of the data processing in the situations set forth by applicable law ("right to restrict processing");
f) to receive your personal data (data which you provided to ECRIN) in a structured, commonly used and machine-readable format and to transmit those data to another controller ("data portability right" allowed only where the processing is based on your consent and the processing is carried out by automated means)
g) to file a complaint to the French supervisory authority, CNIL (French data protection authority), located at: 3 Place de Fontenoy - TSA 80715 - 75334 PARIS CEDEX 07 .
You can also check the CNIL website: https://www.cnil.fr/fr/cnil-direct/question/adresser-une-reclamation-plainte-la-cnil-quelles-conditions-et-comment
In case we are processing your data on a different legal ground, we will inform you about your data protection rights by adequate means.
If you have any questions about how your personal data is being processed within this context or if you would like to exercise your data subject rights, please email your request to firstname.lastname@example.org and we will refer you to our Legal manager.
SPECIFIC INFORMATION FOR EACH OF THE ABOVE PURPOSES IS DETAILED BELOW
PURPOSE 1: To send you emails about the PERMIT project
What types of personal data do we process for this purpose?
First name, Last name, and Email address.
Who has access to your personal data?
ECRIN's staff in charge of the website.
On what legal basis do we process your personal data?
In order for you to sign up for project emails, we will ask you to consent (a consent request is included in the sign-up bar) that we process your data and that we store your contact information (first/last name and email address) in the website "back-end".
How long do we save your data for this purpose?
We will keep your data for as long as your subscription is active.
What happens to your data if you cancel your subscription?
You may choose to stop receiving emails about the PERMIT project by writing to: email@example.com (note: we aim to include an 'unsubscribe' link at the bottom of any future emails, which can also be used for the purpose of unsubscribing).
ECRIN will then permanently delete your data (name, email) from its mailing list.
PURPOSE 2: To measure the effectiveness and efficiency of our website
Cookies help us to improve your experience and interaction with our website. The information gathered enables the website to remember your actions and preferences for a certain period of time, so you do not have to re-enter this information on future visits.
What are cookies?
Cookies are small text files that are placed on your computer / device by websites that you visit. They collect standard information such as browser type, browser language, your Internet Protocol (IP) address, and your interaction with the website.
What cookies and how does ECRIN use on this website?
We use Google Analytics cookies.
ECRIN collects standard information and details of visitor behaviour such as time spent on the website and on specific pages. This is achieved by checking for the unique identifier in a cookie left there on a previous visit.
This information is collected in a way that does not identify anyone and makes no attempt to identify the individuals visiting our website. ECRIN will not associate any data gathered from this site with any personally identifying information from any source.
All of our cookies are anonymous and session based and we hold no personal information in any of our cookies.
You can accept or reject the cookies on our website. To accept, click on the ‘Accept’ button that pops up when you first visit the website. If you do not click on Accept, and close the pop-up window, you are rejecting the cookies.
You can also disable cookies directly in your browser settings.
Who has access to your data contained in cookies?
The ECRIN Communications Officer (and other relevant ECRIN staff members, as appropriate) have access to this data.