How we handle person-identifiable data (consented participants only)

We handle BEST3 participants' data in line with the Data Protection Act (1998). The patient information sheet given to all participants states that they may withdraw from the study at any time without reason and no further data or research will be collected once that participant has withdrawn.

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    All BEST3 participants are encouraged to maintain contact with their study nurse and inform them of any change to contact details as well as any significant health events. Based on patient consent, NHS registries are being used to supplement and confirm events reported by the trial. Existing registries will be providing data on cancer incidence and mortality. Further data will also be collected via the Hospital Episode Statistics (HES) which utilises in-patient, out-patient and A&E data. The process for receiving health care data will involve the study management team, including members based at Barts Clinical Trials Unit at Queen Mary University of London and the University of Cambridge, sending a list of the cohort’s NHS linkage information which will include NHS Number, surname, forename, date of birth and sex to NHS Digital.

    Once matched with records held by the Health and Social Care Information Centre (HSCIC), the Office for National Statistics and Public Health England (including HES, cancer registry and mortality data), participants’ identifiable data will be sent back to the study team (at Cambridge or Barts Clinical Trials Unit) who will update the cohort data. The data from any participants who have withdrawn from participation of the study will not be sent to these third parties for any data linkages. This step will continue to take place in the event of a participant passing away.