Linkage of your data by NHS Digital

Linkage of participants’ data by NHS Digital via the CTSU clinical trial follow-up service is only for participants enrolled into eighteen UK clinical trials for breast cancer, enrolling 1948-2003, which are no longer being followed up by their relevant researchers or practitioners. Follow-up information from up to 19,023 participants is still required to complete the data collection from these trials. Details of the trials can be found in the Appendix.

Long-term follow-up data from the clinical trials will be identified by NHS Digital using a linkage established with participant identity information provided by, or with the consent of the original trialists. This identity information may include name, date of birth, NHS number and address. Once the link is established with NHS Digital the CTSU Clinical Trial Follow-up Service will delete the participants’ identifiable information from their own database within three months. The new follow-up information from NHS Digital will then be supplied with a pseudo-identifier so it can be linked to the correct trial participant and added to the EBCTCG analysis database. The linkage will end when all participants are confirmed to be deceased or permanently lost to follow-up.

The follow-up information received from NHS digital can include date, type and site of cancer, and the hospital or GP where the cancer was registered. When a participant is deceased, the date and causes of death will be received.

The EBCTCG analysis database (which includes the information supplied by NHS Digital) will contain no personal identifiers. Importantly, whilst the information supplied is specific to each participant, no individual person will be identifiable in any publication arising from this work. Your personal data will not be shared with any third parties and will not be used for any automated decision making or profiling. If you would like to have this data withdrawn, please contact the study team using the details given below.