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Sources of Information

FASHIoN Data Transparency 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 at least ten years after completion of the trial.

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.

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: https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/uk-policy-framework-health-social-care-research/

The University of Warwick will collect information about you for the FASHIoN Study from The National Joint Registry and HES. This information will include your name, date of birth, NHS number, contact details and health information, which is regarded as a special category information. We will use this information for linkage to National Joint Registry and HES to identify the need for hip replacement. You can find more about NJR data here: http://www.njrcentre.org.uk/njrcentre/Portals/0/Documents/England/Patient%20consent/Patient%20Consent%20English%20Leaflet%202018%20TO%20PRINT%20(3).pdf?ver=2018-11-26-104333-860

This information will not identify you and will not be combined with other information in a way that could identify you. The information will only be used for the purpose of health and care research, and cannot be used to contact you or to affect your care. It will not be used to make decisions about future services available to you, such as insurance.

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, NHS number 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 site will pass these details to The University of Warwick along with the information collected from you and your medical records. 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, we will do this via telephone, email, text (where consent has been obtained). Also people who need to link to other NHS databases to request information to identify the need for hip replacement 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, NHS number or contact details.

The legal basis for processing this information under the GDPR is undertaking a task (research) in the public interest. The University of Warwick will keep identifiable information about you for at least 10 years after the study has finished and your personal data will not be shared or disclosed to any external third parties. Your NHS hospital will keep identifiable information about you from this study for at least ten years after completion of the trial.

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 for the purpose of 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 and will be retained for 12 months after the end of the study. Please inform your next of kin of the above information if they are not already aware.

You can find out more about how the University of Warwick use your information along with the Data Protection Officer’s Contact information here: https://warwick.ac.uk/services/idc/dataprotection/privacynotices/researchprivacynotice

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We recognise as doctors and researchers that access to the internet can be daunting and the information you get may be both inaccurate and misleading.

Therefore we have listed below some places that we regard as high quality trusted information which may help you to make a decision about the treatment for your hip impingement and entering the FASHIoN study.