Human T cell lymphotropic virus (HTLV) National Register: patient information
Published 5 March 2026
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HTLV National Register and why it’s needed
Human T-cell lymphotropic virus (HTLV) was discovered in 1979. The infection seems to stay in the body for life, but most people do not become ill. HTLV is rare in the UK. There is still much we do not know about HTLV, and the HTLV National Register is a research study set up to help us learn more. The HTLV National Register is managed by the UK Health Security Agency (UKHSA) (previously Public Health England).
Information included in the HTLV National Register
We would like to collect information about any illnesses you have had, any tests or treatments you received, your health now, and, by asking similar questions every couple of years, about your health in the future. By comparing this information from people who are known to have HTLV infection with the same information from people who don’t, we should be able to find out what effect HTLV has on health. Your NHS number will be recorded in the register to help us keep in contact with you and your doctor.
Only people who have already been informed about their HTLV are invited to take part in the HTLV National Register. The more people we can include, the better. We now have around 300 people in the HTLV National Register. Your health information will help doctors give better information to patients and help develop treatments. It is important to understand that participation in this study does not affect the care you receive from your doctor.
How to take part
If you agree to participate in this study, you will need to sign the consent form. Agreeing to participate means that your details about HTLV in your medical records and the results of your HTLV test will be included in the HTLV National Register. You will be asked to complete a questionnaire about your health which will take about 15 minutes. This will update us on the current state of your health. If on the consent form you agree to be contacted by the study coordinator, questionnaires will be sent to you approximately every 2 years, so we can look for changes in your health, and a newsletter will be sent to keep you up-to-date.
Confidentiality
All information that you provide is strictly confidential and will not be passed to any other person or authority. All information is stored securely at UKHSA. Access to this information is restricted to key authorised staff. Both UKHSA and the multi-centre research ethics committees have approved this study.
For more information about how your personal information is collected and used in this study, and to understand your individual data rights, read the UKHSA HTLV National Register privacy notice.
Leaving the HTLV National Register
You can stop participating in the HTLV National Register at any time for any reason by contacting us at the email address provided below. No further questionnaires will be sent to you. If you wish, you can completely withdraw from the HTLV National Register, in which case, any information stored would be deleted from the database.
Further information
For more information about HTLV itself you should consult the information leaflets already provided to you by your doctor or visit the National Centre for Human Retrovirology.
Contact us if you need any further information about HTLV or the HTLV National Register. Let us know if you would like us to keep you updated with the results of the research.
Our contact details are: HTLV Register Co-ordinator, UKHSA, 61 Colindale Avenue, London NW9 5EQ. Email: htlvregister@ukhsa.gov.uk
Phone: while we remain working from home, we do not have a direct telephone line.
If you would like to speak with us, leave your details confidentially with our colleagues on 020 8957 2988 and we will call you.
Next steps
If you are willing to participate, please sign the consent form and return it in the envelope provided or hand it to your clinic who can pass it on to us. Keep a copy for yourself. If you would like more time to think about the study and what is involved, then take the consent form home with you and return it to us later in the envelope provided.