Human T cell lymphotropic virus (HTLV) National Register

The introduction of blood donation screening was an opportunity to establish the UK’s HTLV National Register, the first of its kind in Europe.

HTLV is uncommon in the UK, with increased risk associated with birth in an endemic country. Blood donation screening began in 2002. From 2003, blood donors with HTLV identified by the UK blood services were invited to participate in the HTLV National Register to inform public health about onset and progression of HTLV-associated disease. Other people attending HTLV specialist clinics were also invited to join. The HTLV National Register is a collaboration between UKHSA, NHS Blood and Transplant and Imperial College, London. It is the first prospective study of its kind in Europe.

With consent, clinical staff report participants’ details of diagnosis, clinical history and demographics. Participants are asked to complete a health questionnaire every 2 to 3 years. At the end of 2022, 293 participants consented to join including 128 donors, 9 recipients of blood transfused before screening and 156 clinic attenders. Most participants have HTLV-1 (254), 13 had HTLV-2, HTLV type was undetermined in 3 people and 23 had no evidence of HTLV infection.

Baseline health information has been provided by 72% of participants, and 64% have returned at least 1 of a possible 8 follow-up questionnaires. A total of 658 questionnaires have been returned by 190 participants with HTLV infection who were asymptomatic at recruitment. The follow-up information they provided covered a total 1,638 years overall and indicated that the onset of severe symptoms was rare (1%), and overall, their self-perceived quality of life assessed using standardised questions was good.

Follow-up with 8 participants (in 2022) included views on potential HTLV antenatal screening to reduce the risk of vertical transmission. There have been no surveys regarding the acceptability of screening and this information was sought to inform the latest HTLV antenatal screening review. Among 99 respondents, 95% indicated their support for screening despite acknowledging this could cause moderate anxiety. However, it is acknowledged that participants were not representative of pregnant people so this may not reflect the views of people who would be potentially affected by screening.

For more information, contact htlvregister@ukhsa.gov.uk

Patient information guide

Prospective participants of the HTLV Register are provided with information about what the HTLV Register is, what information is collected, and how we confidentially store and use this data.

HTLV newsletter

The HTLV Register provides newsletters every 2 years to inform participants on the findings of the follow-up and any updates on HTLV.