The CRYOSTEM association and its endowment fund, the HTC Project, are engaged in the advancement of a research program which must meet ethical and regulatory requirements.This means for us, with regard to the protection of personal data and respect for confidentiality, to be guided by a responsible approach.
Personal data are that which belong to persons identified directly (for example by their first and last name) or indirectly (for example by their date and place of birth). They are protected at European level by the General Data Protection Regulation (Regulation (EU) 2016/679, also known as GDPR). Data concerning a person’s health is personal data which is particularly sensitive for privacy, and is therefore subject to particularly strict rules, defined by the RGPD, and, in France, by the Code de la Santé Publique et la Loi Informatique et Libertés.
As part of our mission, we process personal data of:
– patients participating in the CRYOSTEM Cohort and, where applicable, their legal representatives;
– members of the CRYOSTEM network, participants of the program.
Information relating to the protection of their data and their confidentiality is delivered to these people during their first contact with healthcare professionals engaged in the CRYOSTEM network, or with members of our governance team.
We also process personal data of:
– persons who contribute to the CRYOSTEM program by their testimony or their donations
– anyone who shows an interest in the program by browsing the CRYOSTEM or HTC Project websites, subscribing to our newsletter, or downloading any resources available.
The information we provide on this page concerns you because, by interacting with the CRYOSTEM or HTC Project site, you are one of the latter categories of people. Thank you for reading it.
Signed: CRYOSTEM Steering Committee
Data manager identity
The responsible for processing your personal data is the CRYOSTEM Association.
232, bd Sainte-Marguerite
Téléphone : +33(0)4 91 22 34 37
The person responsible for processing your personal data is the CRYOSTEM Association.
Legal basis for data processing
It is in our legitimate interest, in order to allow the constitution of a National Cohort dedicated to the complications of bone marrow transplantation, to inform the public of our action, and to establish contact with people interested to help us carry out this research program.
Some of the data processing that we may carry out may be based on your consent, or may be necessary to meet a legal obligation to which we are subject. We will inform you of this when your data is collected.
Origin and nature of personal data
The data that we process are those:
– that you communicate to us by completing and sending us a form : each type of form distinguishes, by an asterisk, the data we need to answer your request, from those which you have the choice not to fill;
– that we automatically collect during your interaction with our site : this is connection data (for example the type of your terminal, date, time and city of connection) and interaction data with our site ( for example the pages you have visited).
Purposes of processing your personal data
We process your data to :
– manage your preferences and performance access when you visit our websites;
– create a file of registered users to receive regular information about the CRYOSTEM research program;
– appeal to your generosity in the form of donations or participation in our action;
– share your testimony if you wish to spontaneously publish it;
– make a call for projects in case you are a member of the scientific community dedicated to research on the complications of bone marrow transplantation.
A “cookie” is a series of information, generally of a small size and identified by a name, which can be transmitted to your browser by a website on which you connect. Your web browser will keep it for a certain period of time and send it back to the web server each time you connect to it again.
There are different types of “cookies”, depending on their purpose:
– “cookie” allowing to keep your browsing preferences on the site and to optimize the browsing performance;
– “cookie” allowing the site owner to establish statistics for measuring audience and interactions with the site;
– “cookie” allowing users to activate an interaction with social networks while browsing the site, for example to view content located on a social network;
– “cookie” allowing the conduct of targeted advertising operations based on information that the cookie stores concerning your behavior. These “cookies” may have been installed on your device by the site you are visiting, or by another site that tracks your interactions with any other site.
Our websites use optimizing navigation “cookies”, as well as audience measurement “cookies”.
The CRYOSTEM and HTC Project websites do not use targeted advertising “cookies”. When activating the link to one of CRYOSTEM’s social networks (twitter, facebook or linkedin), this social network will present you with its own privacy and cookie management policy, if you do not have already accepted it.
You can delete the optimization “cookies” from your browser (each type of browser has a functionality allowing access to the list of “cookies” specific to each site you have visited and to save them, deactivate or delete them; contact your service provider for more information). This action can nevertheless lead to the degradation of certain functionalities of the site, but does not prevent access to and navigation through the pages.
Recipients of your personal data
Your personal data is intended for the internal staff of the CRYOSTEM Association, or for our service providers who process it on our behalf, according to our instructions and within the framework of a contractual agreement which respects the regulations in force, in particular the GDPR.
Location or transfer of your personal data
We store and keep your personal data in IT environments located in the European Union. We do not transfer your personal data to recipients located outside the European Union.
Duration of storage of your personal data
Those of your data that are collected for site audience statistics are not kept by our sites for more than 25 months.
Those of your data which you have requested to be registered in our newsletter file are kept until your unsubscribe request.
If you are a HTC Project donor, your data is managed by the HelloAsso site. You will find all the detailed information concerning the protection of your data and confidentiality at https://www.helloasso.com/confidentialite
If you have decided to share your testimony with us for publication, we will keep the data for as long as you decide.
Transfer of your personal data
We do not assign, rent, or trade your personal data in any way.
You have the right to withdraw your consent to a data processing which we carry out and which you initially accepted, or to object to any processing which we carry out after having informed you.
You have the right to ask us for confirmation that we are processing your data, to obtain communication and, if desired, rectification or erasure.
You can, for legitimate reasons, ask us to limit the processing, for example for the time necessary to verify the accuracy of the data concerning you. You have a right to the portability of the personal data that you have provided to us, either by actively and consciously declaring them within the framework of access to the services of our websites, or when they are generated by your activity in connection with the use of these services. Please be aware that this right does not relate to data collected and processed on any other legal basis than the consent or the performance of a contract binding us.
Finally, if you consider that we are not respecting your rights or that we are not processing your personal data legitimately, you have the right to fill a complaint with the competent supervisory authority of the Member State in which finds your usual place of residence (la Commission Nationale Informatique et Libertés for France). To contact the CNIL, by post: 3 Place de Fontenoy – TSA 80715 – 75334 PARIS CEDEX 07, or by electronic means using the online complaint form available on the website www.cnil.fr
Exercising your rights
To exercise your rights, you can contact us by mail : Association CRYOSTEM, Institut Paoli-Calmettes, 232, bd Sainte-Marguerite, 13009 MARSEILLE, or by email by writing to firstname.lastname@example.org
Security and confidentiality of your data
Among the means implemented to ensure the security and confidentiality of your personal data, here are those which are the most significant given the nature of the processing that we operate :
– we minimize the type of data collected, in order to strictly treat only those which we need to achieve the set purpose. For example, in the context of a patient’s testimony, we do not publish your last name, and we may have to replace your first name so that your identity is protected from searches made on a name and a first name;
– we implement security measures such as flow encryption, complexity and double authentication of access to our information systems by IT administrators;
– we implement internal procedures which define rules to be applied by CRYOSTEM network staff : for example to manage IT incidents that may affect data, or to define security measures adapted to the level of risks and their impacts privacy potentials of the people whose data we process;
– we have appointed a Data Protection Officer who manages CRYOSTEM and HTC project’s compliance with regulations on the protection of personal data.