Yes.
Queen Mary University of London (QMUL) is the sponsor for this study based in the United Kingdom. We will be using information from you/your child and the respective 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 the information used and using it properly. Queen Mary University of London will keep identifiable information about you/your child for 20 years after the study has finished.
Your rights to access change or move you or your child’s information are limited, as we need to manage their information in specific ways in order for the research to be reliable and accurate. If you withdraw or you withdraw your child from the study, we will keep the information about you that we have already obtained. To safeguard you/your child’s rights, we will use the minimum personally-identifiable information possible. You can find out more about how we use your/your childs' at http://www.jrmo.org.uk/
Researchers from QMUL will collect information from your child and their medical records for this research study in accordance with our instructions.
They will use your/your child’s name, date of birth, contact details and postcode to contact you about the research study, and make sure that relevant information about the study is recorded for your/your child’s care, and to oversee the quality of the study. These researchers may pass your/your child’s details to Barts Health NHS Trust along with the information collected from their medical records. Individuals from Barts Health NHS Trust and regulatory organisations may look at your/your child’s medical and research records to check the accuracy of the research study. The only people in Barts Health NHS Trust who will have access to information that identifies you will be people who need to contact you relating to audit of the data collection process. The people who analyse the information will not be able to identify you/your child and will not be able to find out your name, date of birth or contact details.
Your/your child’s information could be used for research in any aspect of health or care, and could be combined with information about your child from other sources held by researchers, the NHS or government. Where this information could identify you/your child, 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/your child, such as insurance.
Where there is a risk that you/your child can be identified your data will only be used in research that has been independently reviewed by an ethics committee.