UPDATED NHS DIGITAL GDPR PRIVACY NOTICE
We would like to inform participants that an updated General Data Protection Regulation (GDPR) privacy notice regarding long-term follow-up through NHS Digital has been uploaded. You can find it at https://oxhvf.com/orfan/gdpr-privacy-notice/ or download it here in pdf format.
GDPR Privacy Notice
The University of Oxford is the sponsor for this study based in the United Kingdom. We will be using information from you and your 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 information and using it properly. The University of Oxford will keep identifiable information about you for up to one year after the study has finished. This excludes research documents with personal information, such as consent forms, which will be held for 10 years after the end of the study. If you agreed to your samples being used in further research, then your consent form will be held securely until the samples have been depleted or destroyed.
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.
The local NHS Trust will use your name, NHS number and contact details (address, phone number, date of birth) to contact you about the research study, and make sure that the relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from the University of Oxford and regulatory organisations may look at your medical and research records to check the accuracy of the research study. The local NHS Trust will pass these details to University of Oxford along with the information collected from you and your medical records. The only people in University of Oxford who will have access to information that identifies you will be the people that need to contact you for the purpose of study conduct 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 local NHS Trust will keep identifiable information about you from this study in accordance with local policies for medical notes retention.
Where it states in the consent form ‘I understand that long term health outcome data will be collected by study investigators by securely accessing records held with the NHS, Health and Social Care Information Centre (HSCIC) ‘ we would like to inform participants that the HSCIC has now changed its name to NHS Digital.