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Information for the public

DATA TRANSPARANCY STATEMENT

The University of Warwick is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Warwick will keep identifiable information about you for a minimum of 10 years from the end of the study.

When you agree to take part in a research study, the information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.

Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government. Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance. Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee. Your rights to access change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally identifiable information possible.

You can find out more about how we use your information here: https://warwick.ac.uk/services/idc/dataprotection/privacynotices/researchprivacynotice

Your NHS hospital will collect information from you and your medical records for this research study in accordance with our instructions. Your NHS hospital will use your name and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from The University of Warwick and regulatory organisations may look at your medical and research records to check the accuracy of the research study. Your NHS hospital will pass these details to The University of Warwick. The only people in The University of Warwick who will have access to information that identifies you will be people who need to contact you to complete study questionnaires and to follow-up on any missing information in questionnaires that we receive via telephone, email, NOK and text (where consent has been obtained) or to audit the data collection process. The people who analyse the information will not be able to identify you and will not be able to find out your name or contact details. Your NHS hospital will keep identifiable information about you from this study for a minimum of 10 years after the study has finished.

Next of Kin

The University of Warwick will process your next of kin’s personal data; their name, address and phone number for the purpose(s) of making contact with them in relation to your participation in this clinical trial if we are unable to contact you. The legal basis for processing this personal data is ‘Legitimate Interest’. Your next of kin’s personal data will not be shared or disclosed to any third parties external to the University of Warwick.

Please inform your next of kin of the above information if they are not already aware.