You can download a copy of the NIHR BioResource Privacy Notice. This explains what we do with the information we hold about you, how you can request access to this personal data, and other data rights.
General Data Protection Regulation (GDPR)
The Cambridge University Hospitals NHS Foundation Trust is responsible for managing the NIHR BioResource Research Tissue Bank. The University of Cambridge and the Cambridge University Hospitals NHS Foundation Trust are the sponsor for the NIHR BioResource – Rare Diseases study based in the United Kingdom. We will be using information from you and your medical records in order to undertake these studies and will act as the data controller for these studies (Cambridge University Hospitals NHS Foundation Trust for the NIHR BioResource Research Tissue Bank; Cambridge University Hospitals NHS Foundation Trust and University for the NIHR BioResource – Rare Diseases study). This means that we are responsible for looking after your information and using it properly. The University of Cambridge and the Cambridge University Hospitals NHS Foundation Trust will keep identifiable information about you for 10 years after the study has finished, and we may approach you to extend this.
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.
If recruited by an NHS Trust/site, the below will apply to you:
The NHS site team will collect information from you and your medical records for this research study in accordance with our instructions.
The NHS site will use your name, NHS number and contact details including address, phone number and email address (where available) 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 NIHR BioResource (which is sponsored by the Cambridge University Hospitals NHS Foundation Trust for the Research Tissue Bank, or by the University of Cambridge and the Cambridge University Hospitals NHS Foundation Trust for the Rare Diseases study) and regulatory organisations may look at your medical and research records to check the accuracy of the research study. The NHS site will pass these details to NIHR BioResource along with the information collected from you and/or your medical records.
The only people in NIHR BioResource who will have access to information that identifies you will be people who need to contact you to send newsletters, invite you to events such as open days, or invite you to further studies, or 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 NIHR BioResource will collect information about you for research from medical records, health registries and sometimes we will ask you to complete questionnaires. This information will include your name, NHS number, contact details and health information, which is regarded as a special category of information. We will use this information to try to elucidate the causes of rare disease, and generate faster ways to diagnose patients.
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.