HTLV-1 Information Site

Our Aims

This site has been designed by Japanese researchers and clinicians in the field of Human T-cell Leukemia Virus 1 (HTLV-1) and its associated diseases. It aims to deliver reliable basic information and hot topics plainly to people living with HTLV-1 with or without HTLV-1-associated diseases, and their families, as well as medical workers and public health staffs. This information site was prepared and supervised by the Steering Committee. We hope that public health and medical personnel will also be able to obtain relevant information from this e-learning site.

Nickname and logo

Can you find the letters H, T, L, and V in the nickname of this site? We chose this nickname (HoT LiVes) so that it would be easy to remember and familiar to the site’s visitors, encouraging repeat visits. The watercolor tone of our site and vibrant logo represents our hope to eradicate this virus in the near future.

Please introduce HoT LiVes to many people you know.

Are there people around you who would like to know about, consult with, or support people living with HTLV-1, and patients with associated diseases. Please introduce this site for the people.
You can feel free to download and print the PDFs below.
PDF (Japanese document)

For first-time users

This site provides information on HTLV-1 and associated diseases. Each linked page is written in Japanese. Please use your browser’s translation function to read the text in these pages in your language.

Site contents

What is HTLV-1?

Basic knowledge on HTLV-1 is summarized in the Q&A format. It has been written and supervised by researchers who specialize in HTLV-1 and associated diseases.

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Learn more as medical workers or administrative staff.

As a part of our e-learning project, we provide videos about HTLV-1 and its associated diseases to medical professionals. If you require more information or want to obtain the latest information, please visit this site.

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How to consult an expert

You can obtain free consultation through your phone; we will connect you to a nurse with specialized knowledge.

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You can consult a specialist in HTLV-1-associated diseases online from your own home.

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How to collaborate on the studies of HTLV-1-associated diseases

Joint Study on Predisposing Factors of ATL Development is a research organization that registers HTLV-1 carriers with sample depositions. It conducts epidemiological studies (cohort studies) on HTLV-1 to understand the risk factors for adult T-cell leukemia. The studies are conducted by hematologists and researchers of various hospitals, research institutions, and universities. Our main activities include annual follow-ups of the participants with specific testing and analysis. The results are reported to the participants and their blood samples are used to form a biorepository for future research.

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HTLV-1–associated myelopathy (HAM) network aims to develop treatment methods for HAM through collaboration among patients, medical professionals, and researchers. To elucidate the pathology of HAM and develop treatments, we ask HAM patients to register to receive the latest information. Various laboratory examinations to diagnose and evaluate HAM are performed by professionals involved in the medical care of HAM patients.

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We are conducting research on registries (patient registration systems) and biorepositories (specimen collection systems) for aggressive Adult T-cell leukemia/lymphoma (ATL). This site provides useful information for patients and people involved in ATL medical care.

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For HTLV-1 carriers (those who are infected), a registration site called Carri-Net exists. We have many carriers registered. They share their experiences of the disease, and we use these experiences for policymaking. By registering, you can read the survey results of other carriers and the full text of the expert column contents.

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Site operator

This site is prepared and run by a government grant, “A comprehensive evaluation that contributes to the development of foundations for HTLV-1 carrier measures and the promotion of appropriate research and development supporting Anti-HTLV-1 initiatives (research representative Toshiki Watanabe),” by the Japanese Government from the Health, Labour and Welfare Policy Research Grants, Research on Emerging and Re-emerging Infectious Diseases and Immunization.

Introduction to the HTLV-1 Site Steering Committee
The committee comprises clinicians and researchers with varied expertise from various institutions to disseminate accurate information on HTLV-1.

HTLV-1 Site Steering Committee

HTLV-1 Site Management Office