Longitudinal investigation for enhancing Down Syndrome Research (LIFE‐DSR) Study: Tau PET and CSF sub‐studies

The Down syndrome (DS) population is aging rapidly with a life expectancy of nearly 60 years of age compared to 25 years of age in 1980. There are approximately 210,000 people with DS in the USA and about 85,000 are >30 years of age.1 With longevity comes a high risk of Alzheimer’s disease (AD). The lifetime risk of AD is estimated to be >90% ,2 and is the leading cause of death for adults with DS.3 Symptoms of DS associated AD (DS‐AD) appear at approximately 45 to 55 years of age with early biomarker changes occurring a decade or more earlier at about 35 years of age.4 Recent fluid biomarker and amyloid imaging data show that AD pathogenesis in individuals with DS are similar to AD biomarkers in individuals with late‐onset AD.5 Published data using the tau positron emission tomography (PET) imaging agent flortaucipir provide data on tau accumulation in DS‐AD that correlates with amyloid burden6 and cognitive decline7 .