Category: Samples and data management
Labels: data protection, pseudoanonymisation
Creation date and Author: Astrid C., July 22nd 2025
Last Update and Author: NA
Related questions:
- What is the difference between “pseudonymised data” and “anonymised data” ?
- Describe how the samples will be labeled and linked to the participant?
- Will CURE51 be able to identify patients?
- How secure is the hosting environment?
Anonymisation vs Pseudoanonymisation
Pseudonymisation
Pseudonymisation is defined as “the processing of personal data in such a manner that the personal data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the personal data are not attributed to an identified or identifiable natural person” cf. article 4, 5) of the RGPD.
Anonymisation
Anonymisation is when data is “rendered anonymous in such a way that the data subject is not, or is no longer, identifiable”.
Both anonymous data and pseudonymous data are no longer attributable to a data subject. However, the difference with anonymisation is that pseudonymisation has the possibility of re-identifying a person thanks to additional information.
ROSALIND Patients Data
In accordance with the Data Protection Laws, the Center will provide CURE51 only with de-identified data via pseudoanonymisation that will never directly identify a patient.
In this respect, the Center is responsible to pseudonymise any patient Personal Data before sending it to the CURE51 and/or uploading it into the Patient Profile Platform (PPP).
For this purpose, the Center will associate to each patient Personal Data a unique code number. Only the Center will retain the correspondence list between the code and the patient identifying information.
CURE51 undertakes never to try to re-identify a patient.
Data Storage and Transfer
All the data is stored in a Health Data Hosting (HDS) environment.
The center is the only one uploading the Personal Data into the Platform, and is the sole contact point of the patients, as to providing information to the patients, collecting their potential opposition to being part of the Study, and more generally enabling the patients to exercise their rights and communicating such requests to CURE51.
CURE51 employees are trained on a regular basis regarding data protection.
CURE51 has assessed its privacy and security risks in a Private Impact Assessment.