- You are invited to complete this one-off online survey about a new type of health screening. Before deciding, please read the following information.
- This study is being conducted by Ninian Schmeising Barnes, Prof. Jo Waller, Dr Emma Lidington and Dr Elisavet Moschopoulou. It has been approved by Queen Mary University of London’s Research Ethics committee (QME26-1948).
- What is the purpose of the study and what would taking part involve?
- The purpose of this study is to understand views on a new health test called capsule sponge screening. The online survey will take 10 minutes to complete.
- Do I have to take part?
- Taking part is completely voluntary. If you withdraw during the survey, your answers will not be used in our analyses. Please answer all questions. Some questions have the option: “prefer not to say” if you would rather not answer them.
- What will happen if I want to withdraw from this study?
- You can withdraw from this study at any point until you finish the survey and your answers are submitted. You do not need to provide a reason for withdrawing and there are no negative consequences if you decide to withdraw. Once you have completed the survey and submitted your responses, you will no longer be able to withdraw your responses
- What are the possible disadvantages and risks of taking part?
- We do not think there are any risks to this study, but some people can get worried or distressed when they learn more about certain health risks. If you have concerns about cancer, please contact your GP or call the Cancer Research UK helpline on 0808 800 4040 or Macmillan on 0808 808 0000. Guts UK provides information about Barrett’s, reflux and cancer of the food pipe: https://gutscharity.org.uk/advice-and-information/conditions/barretts-oesophagus/. If you have any questions about the study, you’re welcome to contact the study Chief Investigator: Jo Waller (jo.waller@qmul.ac.uk)
- What information about me will you be collecting?
- You will be asked a series of questions about a new health test. We will give you some information about it, so don’t worry if you haven’t heard of it before. We will also ask you some questions about your health, and some demographic questions.
- How will my data be stored and who will have access to it?
- Your answers will be stored securely according to data protection law. Your data will be anonymous and will only be used for research purposes. It will be stored on university servers that can only be accessed by the research team.
- When and how will my data be destroyed?
- We will keep your anonymised data indefinitely. This is accordance with Queen Mary University of London Policies: Queen Mary Records Retention Schedule; Information/Data Governance Policy – DG16 – Disposal of information
- How will my data be used and shared?
- The data will be analysed by researchers at Queen Mary University of London and may be shared with other researchers for future studies.
- What should I do if I have concerns about this study?
- This research is being run by Queen Mary University of London and funded by Cancer Research UK. The research findings will be published in academic journals. If you have any concerns about the manner in which the study was conducted, in the first instance, please contact the researcher(s) responsible for the study: Prof. Jo Waller (jo.waller@qmul.ac.uk)
- If you have a complaint which you feel you cannot discuss with the researchers, then you should contact the Research Ethics Facilitators by e-mail: research-ethics@qmul.ac.uk.
- When contacting the Research Ethics Facilitators, please provide details of the study title, description the study and QMERC reference number (where possible), the researcher(s) involved, and details of the complaint you wish to make. Queen Mary University of London processes personal data for research purposes in accordance with the lawful basis of ‘public task’.
- Who can I contact if I have any questions about this study?
- If you have any questions please contact n.schmeisingbarnes@qmul.ac.uk.
- Please read Queen Mary’s privacy notice for research participants containing important information about your personal data and your rights in this respect.
- If you have any questions relating to data protection, please contact Queen Mary’s Data Protection Officer, Queens’ Building, Mile End Road, London, E1 4NS or data-protection@qmul.ac.uk or 020 7882 7596.
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