How is information about participants collected?
During participation in the study, individuals will provide personal data about themselves, such as information on medical condition and medical history, to the study nurses at study visits (and relevant blood and urine test results held at local hospitals). These data will be entered into a computer system managed by the University of Oxford and stored securely.
The University of Oxford is a world-leader in developing systems to ensure that information is stored safely for studies such as EMPA-KIDNEY. Only staff with appropriate training and permission can access this computer system.
In addition, for participants based in the UK, the coordinating centre in Oxford will ask for information about participant health from participants' doctors, registries (eg the UK Renal Registry), and NHS Digital (or other central NHS bodies). The EMPA-KIDNEY team would send names, dates of birth, sex, NHS numbers (or CHI numbers in Scotland) and postcodes to NHS Digital (or other central NHS body) who can link this information to individual participants in the study.
For participants living in England and Wales, NHS Digital provides information about any cancer on behalf of Public Health England. NHS Digital and other central NHS bodies together provide information about admissions to hospital (called Hospital Episode Statistics) and development of cancer. In addition, they provide information about people who have died. Having this information will help to make sure that the study team does not make unnecessary contact and cause any distress to relatives, as this information includes date and cause of death supplied on behalf of the Office for National Statistics. Similar information will be requested from the relevant bodies for participants living in Scotland.