UK and Ireland Vasculitis Susceptibility and Patient Outcomes Study (UKIVAS)


Ethics Ref: 10/H1102/77

IRAS Project: 59424

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 research 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 10 years after the study has finished. If you have agreed to the further research use of samples, your consent form will be retained by your NHS Trust research site until the sample has been used up.

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.

You can find out more about how we use your information on the study website or by contacting

Your NHS Trust will collect information from you and your medical records for this research study in accordance with our instructions. Your NHS Trust will use your name, NHS number, date of birth and contact details 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 University of Oxford and regulatory organisations may look at your medical and research records to check the accuracy of the research study. Your NHS site will pass these details (except your name and contact details) to the University of Oxford along with the information collected from you and/or your medical records. The only people in the University of Oxford who will have access to information that identifies you will be people who need to 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. Your NHS Trust will keep identifiable information about you from this study for 10 years after the study has finished.

The University of Oxford will collect information about you for this research study from your NHS Trust. This information will include your date of birth, NHS number, and health information, which is regarded as a special category of information. Where you have agreed, we will use this information to enable us to link your data with health datasets held by the national provider (currently NHS Digital) and other relevant disease registries and national health and social care organisations, such as, but not limited to, the Office of National Statistics and Public Health England. Data may also be linked to other ethically approved studies you have participated in.

When you agree to take part in a research study, the information about your health and care may be provided to 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 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.

The information will only be used for the purpose of health and care research, and cannot be used to contact you or to affect your care. It will not be used to make decisions about future services available to you, such as insurance.

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