Oesophageal Cancer Clinical and Molecular Stratification

+44 (0)1223 348667

How we handle patient data

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from the study at any time without reason and no further data or research will be collected once that participant has withdrawn.

They should contact the Study Coordinator, Nicola Grehan (contact@occams.org.uk) if they wish to withdraw.

Please rest assured that the standard of care you will receive if you choose to withdraw will not be affected in any way.

If they remain unsatisfied about any aspect of the way the study was conducted they may also contact Cambridge University Hospitals NHS Foundation Trust Patient Advice and Liaison Service (PALS) on 01223 216 756 or pals@addenbrookes.nhs.uk to lodge a formal complaint at any time.

Based on patient consent and ethical approval, 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 inpatient, out-patient and A&E data.

The process for receiving healthcare data will involve the study management team at Cambridge and Genomics England, sending a list of the cohort’s NHS linkage information which will include NHS Number, surname, forename, date of birth, sex and a unique identifier to NHS England. Once matched with records held by NHS England information including HES, cancer registry and mortality data will be sent back to the study team who will update the cohort data which is securely stored on a server.

The data from any participants who have withdrawn from participation of the study will not be sent to these third parties for any data linkages.

Should we become aware of your death via ONS or from your trust research nurse, we will no longer request data about you from these bodies but may continue to store personal identifiable data in line with the overall retention period of the study.

Please contact Nicola Grehan (contact@occams.org.uk)