The company cloud-R Srl, viale Jenner 51 - 20159 Milan (Italy) firstname.lastname@example.org, has developed the cloud-R HAE platform in web mode and as a mobile app to enable patients with Hereditary Angioedema to register attacks in a user-friendly way, and to provide useful information to keep under control the therapy and prophylaxis. To do this it is necessary to process (i.e. register, store, organize, delete when requested and perform other operations) your personal and health data. With this document we inform you about how we process your data so that you can choose to use this service or not, taking these aspects into consideration.
Personal data are the data that identify your person, such as your name, surname, e-mail address, NHS code, etc. Sensitive data are information regarding your health status, and in this specific case, data concerning the diagnosis and attacks of angioedema.
If you are reading this page it is because you have joined the "Global Hereditary Angioedema Registry" and you have signed the informed consent related to your participation.
To process personal data it is necessary that someone defines the purposes and methods of treatment. This is done by the "data controller". The data controller is not the owner of your data, because that's you, always. You authorize the data controller to process your data for purposes that you consider useful and correct. In this case, the purpose of processing your data is to allow the direct entry by you of data related to your attacks, therapies and prophylaxis in order to feed the register efficiently and effectively.
With reference to the web and mobile App you are now using, the controller of your data is indicated in the information that was given to you at the time of your enrolling to the Global Hereditary Angioedema Registry. The data controllers have appointed cloud-R Srl "data processor": it means that we take care of the technological components of the software and of the procedures that allow you to enter data and use the registry, according to the instructions of the data controllers.
3. WHO CAN SEE YOUR DATA
Your personal data are only visible to you and your specialist physician (or center of reference) for Angioedema, as indicated in the information documents given to you when you joined the registry. In no way will your personal information be visible
Aggregate information about attacks, treatments and prophylaxis, flow into the general database of the registry in anonymized form, and are useful for analyzing the disease and the therapies in order to improve treatments and prophylaxis of Angioedema.
4. HOW YOUR DATA ARE STORED
Your personal data are stored in a secure and encrypted mode (they are therefore unreadable to anyone who does not have the keys to decrypt the code, i.e. to everyone except you and your doctor or your center of reference for angioedema ).
The servers where the data are stored are located in Europe, or if it is necessary to make data management more efficient, they can also be located in other areas, but always in a secure manner and in compliance with European laws on the protection of privacy (Regulation EU 2016/679).
5. CLOSING YOUR ACCOUNT
If you decide not to use this platform anymore (both App and web) for updating your Angioedema diary, you can inform your reference physician for Angioedema about your choice to close your account. Your login credentials and data will be deleted. Your data already merged in anonymized form in the registry will not be lost. Furthermore, the termination of your account will not affect your participation in the registry study referred to in point 2, for which you can contact any time your specialist doctor (or center of reference) for angioedema.