Guidance

Human T cell lymphotropic virus (HTLV) National Register: privacy notice

Published 16 December 2025

About UKHSA and the HTLV National Register

The UK Health Security Agency (UKHSA) is responsible for planning, preventing and responding to external health threats, and providing intellectual, scientific and operational leadership at national and local level, as well as internationally. UKHSA will ensure the nation can respond quickly and at greater scale to deal with pandemics and future threats.

We collect and use personal information to fulfil our remit from the government.

UKHSA’s responsibilities include managing the HTLV (human T cell lymphotropic virus) National Register study. The HTLV National Register was set up in 2003 to track disease progression in donors and recipients, and patients from HTLV specialist clinics. This one-of-its-kind European study is a collaboration between Imperial College London, NHS Blood and Transplant (NHSBT) and UKHSA. The Register supports public health by monitoring HTLV-related diseases.

This privacy notice is for patients that participate in the HTLV National Register (referred to as ‘the Register’ hereafter). It explains how your personal information is collected and used by UKHSA. It also explains what your information rights are and how you can find out more or raise a concern.

UKHSA is an executive agency of the government, sponsored by the Department of Health and Social Care (DHSC). The DHSC is the data controller for the personal information we collect, store and use to fulfil our remit.

The information we collect

The Register collects personal information on patients affected by HTLV and who have provided consent under common law to participate in the Register. While initially including individuals who were both positive and negative for markers of HTLV, since 2013 it has focused on asymptomatic positive participants to better understand long-term outcomes.

If you participate , the personal information we collect and use includes your:

• full name
• date of birth
• sex/gender
• ethnic group
• country of birth
• home address
• email address
• NHS number
• health information, including your physical health, mental wellbeing, symptoms and medical diagnosis and clinical history
• treatment information, including test results and prescriptions
• information relating to sexual partners
• number of pregnancies and outcome

How we collect your information

Once you have provided your common law consent to participate, we collect your personal information from:

• clinical staff at the blood service (for example NHSBT) or HTLV clinic providing your care: they share your demographic information, NHS number, contact information, medical diagnosis, and clinical history with the Register as a one-time data transfer
• directly from you: you provide information relating to your health and treatment, sexual partners, and pregnancies. This is collected through a baseline questionnaire at the time of recruitment, and through follow-up questionnaires every 2 to 3 years

The purposes we use your information for

This personal information is used to:

• ask for your information at recruitment and follow-up at regular intervals to help us track the onset of disease over time
• assess your past and current health and wellbeing in general, and also to look for specific signs and symptoms of HTLV-related disease
• your demographic characteristics can help us understand if our findings are different for different people, for example by gender, age and ethnic group.
• to inform public health about onset and progression of HTLV-related disease over a long time
• outputs which communicate findings from the Register include progress reports for the study team, newsletters for participants and peer review publications in scientific literature
• your contact information is used to send you newsletters to keep you informed about the Register, for follow-ups, and for linking with national registries to check if you change address or die

How we protect your information

Your personal information is protected in several ways:

• it is stored on computer systems that are kept up to date and regularly tested to make sure they are secure and protected from viruses and hacking
• it can only be seen by UKHSA staff that have been trained to protect your privacy
• whenever possible, we use your information in a form that does not directly identify you, for example when completing data analysis
• if we share your personal information with other organisations, we only ever do so when we have a lawful basis and we would use secure computer systems or encrypted email
• no information that could identify you is ever published by UKHSA
• both UKHSA and the Multi-centre Research Ethics Committees have approved this study

Where we store your information

Your personal information is stored securely on UKHSA systems, within the UK.

Who we share your information with

We may share your personal information with other organisations to support the study. If we do share your personal information, we only do so where the law allows, and we only share the minimum necessary amount of information.

How long we keep your information

Your personal information is retained by UKHSA for the duration of your participation in the study and beyond, including after your death, unless you choose to withdraw. This retention period is kept under regular review and if the study concludes, we will consider pseudonymising or anonymising your data to reduce privacy risks while preserving its research value.

Your information and withdrawal rights

Under data protection law, you have several rights over your personal information. You can find out more about these rights and how to exercise them in the UKHSA general privacy notice under the ‘Your rights over your information’ section.

If you would like to withdraw from the study, you can do so at anytime by following the guidance in the patient information guide.

Our legal basis to use your information

We process your personal information for this research study under the UK General Data Protection Regulation (UK GDPR) lawful bases that relate to public interest in public health (Article 6(1)(e)) and scientific research purposes (Article 9(2)(j)).

Separately, we obtain your common law consent to meet the legal and ethical requirements for processing confidential patient information, in line with the common law duty of confidentiality.

How to find out more or raise a concern

If you would like to find out more about the HTLV National Register, you can contact us at htlvregister@ukhsa.gov.uk

If you have any concerns about how personal information is used and protected by UKHSA, you can contact the DHSC Data Protection Officer at data_protection@dhsc.gov.uk or by writing to:

Office of the Data Protection Officer
Department of Health and Social Care
1st Floor North
39 Victoria Street
London
SW1H 0EU

You also have the right to contact the Information Commissioner’s Office (ICO) if you have any concerns about how UKHSA uses and protects any personal information it holds about you. You can do so by calling the ICO’s helpline on 0303 123 1113, via the ICO’s website or by writing to:

Customer contact
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
SK9 5AF

About this privacy information

The personal information we collect and use may change so we may need to revise this notice. If we do, the publication date on this page will change.