The main aim of the national register is to describe the epidemiology of HTLV-1 in blood donors as well as asymptomatic patients and their contacts in the UK.
The HTLV national register collects information on a group of HTLV-1 infected individuals, their contacts, and follow-ups to investigate the signs and symptoms of disease or if they develop.
The UK Health Security Agency (UKHSA) conducts this study in collaboration with NHSBT, Imperial College and colleagues at HTLV specialist referral centres.
For more information, contact htlvregister@phe.gov.uk
HTLV surveillance methods
UKHSA coordinates enhanced national HTLV surveillance activities. Reports of new HTLV diagnoses are received from laboratories and clinicians in England and Wales. Data are held centrally by UKHSA’s HIV and STI department.
HTLV diagnoses data from the NHSBT, which monitors HTLV infection in blood donors, are also incorporated into the surveillance dataset.
Find out more information about the HTLV surveillance methods.