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Valvular heart disease (VHD) occurs when one or more valves does not form properly before birth (congenital) or if they become damaged during life (acquired). In the developing world, infections such as rheumatic fever are still prevalent and can cause valve damage. In the UK and other developed countries, the most common cause of VHD is degeneration - wear and tear - over time.

A cardiology team, led by Professor Bernard Prendergast and Professor Saul Myerson, at the Oxford University Hospital NHS Foundation Trust, wanted to find out how common VHD was in the older population. In 2009, the team started the OXVALVE study to screen people over the age of 65 years for VHD. The study recruited over 4,000 people and found an overall prevalence of 12.5%. Full details of the OXVALVE study and its findings can be found here: https://www.rdm.ox.ac.uk/oxvalve.

The Nuffield Department of Primary Care Health Sciences team at the University of Oxford, led by Professor Richard Hobbs and Dr Clare Taylor, is exploring the importance of the OXVALVE findings for Primary Care through a linked programme of work (OXVALVE-PC). The first project, OXVALVE-Survive, will link the information provided by participants at study visits with NHS Digital and civil registration data to report the survival rates, and cause of death, for the whole OXVALVE cohort. This work will determine how long people live for following a diagnosis of VHD, and whether they die from heart-related problems or something else, to help doctors and patients understand more about the condition.

Oxford University Hospital NHS Foundation Trust is the data controller for the OXVALVE study. The Trust works in partnership with the University of Oxford through the NIHR-funded Oxford Biomedical Research Centre. For the OXVALVE-Survive project, the data processor will be the University of Oxford given their expertise in prognostic research.

A minimum amount of identifiable data (name, date of birth, NHS number) from OXVALVE participants will be shared with NHS Digital by the University of Oxford to carry out the linkage between the study data and civil registration data. The common law duty of confidentiality is met by participants giving consent to participate in the OXVALVE study. NHS Digital will provide date and cause of death directly to the study team. As soon as the date and cause of death is linked with the participants study information, any data that could be used to directly identify individuals (name, date of birth, NHS number) will be removed. The data will be stored for the duration of the OXVALVE study. The current end date for the study is 31st March 2022 but the study may extend beyond this date if further funding is secured.

If you are an OXVALVE participant, you are free to withdraw your consent for data linkage with NHS Digital at any time. Please contact the study team at oxvalvepc@phc.ox.ac.uk, call 01865 289300 or write to us at OXVALVE-PC, Nuffield Department of Primary Care Health Sciences, Radcliffe Primary Care Building, Woodstock Road, Oxford, OX2 6GG.

The data controller is Oxford University Hospital NHS Foundation Trust. The OXVALVE team can be contacted directly at: https://www.rdm.ox.ac.uk/oxvalve/information-for-participants/participating-in-the-oxvalve-study.

Personal and personal sensitive data will be processed. The legal basis for processing under the General Data Protection Regulation (GDPR) will be Articles 6(1)(e) task in the public interest’ and 9(2)(j) ‘research’. Personal data will be stored until linkage of the dataset has been completed then removed. The data protection officer for the Trust can be contacted at dpo@ouh.nhs.uk.  

All participants in the OXVALVE study have the right to request from the controller access to and rectification or erasure of the personal data, or restriction of processing of personal data concerning the data subject, or to object to the processing of such personal data, as well as the right to data portability. The full details of the privacy policy, including how to make a complaint, can be found at: https://www.ouh.nhs.uk/privacy/default.aspx