The University of Cambridge and NHS Cambridgeshire and Peterborough ICB are the co-sponsors for this trial based in the United Kingdom. The University of Cambridge will be using information from you and your medical records in order to undertake this trial and will act as the data controller for this trial in regards to data held at the University of Cambridge. This means that we are responsible for looking after your information and using it properly. The SAFER Trial is part of an important long-term programme of research that relies on long-term follow-up of participants. We will retain your personal and trial data for as long as we need it to meet our purposes, including our medical research and any legal, accounting or reporting requirements. This will be until the wider research programme has been completed, possibly longer if we need to.
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 trial, 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 at https://www.medschl.cam.ac.uk/research/privacy-notice-how-we-use-your-research-data/
When you agree to take part in a research trial, the information about your health and care may be provided to researchers running other research trials 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.
The Health Research Authority has produced general information about how health researchers use information from patients, you can find it here.
To find out more about how health data is used in the NHS please visit the Understanding Patient Data website here.