Database study using the HAM patient registry “HAM-net”

Abstract

Human T-cell leukemia virus type 1 (HTLV-1)-associated myelopathy (HAM) is a severe refractory disease characterized by progressive paraparesis due to chronic inflammation of the spinal cord for which only a few effective treatments exist. Given its low prevalence in developed countries outside of Japan, only limited data on biomarkers and treatment strategies are available internationally. Consequently, there is no globally recognized treatment for HAM, resulting in suboptimal clinical care. In the case of rare diseases, such as HAM, conducting large-scale studies to continuously collect clinical data has proven challenging. Recognizing the potential value of a patient registry in gathering information from a diverse patient population, we established the nationwide registration system“HAM-net” in 2012, which has proven to be an invaluable tool for advancing epidemiological research.