Personal data we collect about you

Information about people taking part in ASCEND comes mainly from the questionnaires that you completed on a regular basis during the trial. In addition, we may receive information from your GP or your hospital records about serious illnesses such as heart attacks, cancers or severe bleeding episodes.

We also receive information from health registries and NHS bodies, such as NHS Digital, which hold national health and social care records. We provide your details (name, date of birth, NHS number or CHI number in Scotland, and postcode) to health registries in order to receive information about study participants in return. This includes hospital attendance and admissions, and in future will include data on mental health, primary care (data from GPs), diabetes audits, and prescriptions. Similar information is requested from Public Health Scotland and the NHS Central Register (NHSCR) about Scottish patients, and from Digital Health and Care Wales (DHCW) (previously NHS Wales Informatics Service) for patients in Wales. In addition, NHS Digital provides us with information relating to cancer registrations on behalf of Public Health England (PHE).

NHS Digital, or similar bodies in Scotland and Wales, also provide us with information about people who may have passed away, which includes date and cause of death. This is supplied on behalf of the Office for National Statistics (ONS) and is sourced from civil registration data. Finally, we obtain information about your eye health from the NHS Diabetic Eye Screening Programme (DESP). The processing of health registry data enables accurate coding of the medical events experienced by study participants, ensuring that high quality information is available for analysis.