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Patients & Parents



General Data Protection Regulation

Great Ormond Street Hospital for Children (GOSH) is the sponsor for this study based in the United Kingdom. We will be using information from your child and their 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 child’s information and using it properly. Personal and research data will be stored for the duration of the study and for 10 years after the study finishes.

You and your child’s rights to access, change or move your information are limited, as we need to manage your child’s information in specific ways in order for the research to be reliable and accurate. If you or your child want to withdraw from the study, we will keep the information about your child that we have already obtained. To safeguard you and your child’s rights, we will use the minimum personally-identifiable information possible.

When you and your child agree to take part in this research study, the information collected may be shared with 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 child’s 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 child’s 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 the government.

Where this information could identify 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, such as insurance.

Where your child can potentially be identified your child’s data will only be used in research that has been independently reviewed by an ethics committee.

You can find out more about how we use your information you can contact:


Office Location

Juvenile Dermatomyositis Cohort Biomarker Study & Repository (JDCBS)
UCL Great Ormond Street
Institute of Child Health
6th Floor
30 Guilford Street
London, WC1N 1EH