To understand the health of participants in our study—and to track how this change over time—we use medical and other health-related records (i.e. Hospital Episode Statistics).
The National Health Service (NHS) doesn’t have a single record system and thus information needs to be obtained from various sources.
The ‘link table’ is used to retrieve relevant health information. A single table linking participant’s study identification number to the Donor Number, NHS number and other information that directly identifies you is stored in a separate, password protected location.
The retrieved information is ‘de-personalised’ by removing personal details such as name or NHS number and replacing them with a unique anonymous study number. The de-personalised information is then stored in a restricted-access, study database.
The University of Cambridge is the Data Controller for this study. This means, we process personal data for scientific research purposes as part of the University of Cambridge’s public task under articles 6(1)(e) and 9(2)(j) of the General Data Protection Regulation.
Please see the NIHR Blood and Transplant Research Unit in Donor Health and Genomics website for more detail.