HTLV–1–associated myelopathy patient registry “HAM–net”

Abstract

Human T–cell leukemia virus type 1 (HTLV–1)–associated myelopathy (HAM) is a severe refractory disease, with only few effective treatments, characterized by progressive paraparesis due to chronic inflammation of the spinal cord. Due to its low prevalence in other developed countries outside Japan, only limited data on biomarkers or treatment strategies for HAM are available. As a result, there is no internationally recognized treatment for HAM and the quality of clinical care is low. In rare diseases such as HAM, large scale studies to collect continuous clinical data have been difficult. Since a patient registry could be useful to prospectively collect information from many patients. We established the nationwide registration system “HAM–net” in 2012. The HAM–net has been an effective tool for promoting epidemiological studies.