NIFD & 4RTNI RESEARCH STUDIES Kimiko Domoto-Reilly, MD Cognitive / Behavioral Neurology Fellow Massachusetts General Hospital & Brigham and Women’s Hospital Background: ADNI Alzheimer’s Disease Neuroimaging Initiative (2004) natural history study of early Alzheimer’s disease 800 subjects from 50 sites across North America control subjects and subjects with memory impairment 6-12 month evaluations over 3 years clinical / cognitive assessments brain scans: MRI, PET biofluid collection: blood, urine, CSF funded by National Institute on Aging, the Alzheimer’s Association, and multiple drug companies Background: ADNI freely shared data repository many new insights into Alzheimer’s disease European-ADNI (2006); Japanese-ADNI (2006); ADNI-GO (2010); ADNI II (2011); Parkinson’s Progression Markers Initiative NIFD: Overview Neuroimaging in Frontotemporal Dementia natural history study of early FTD 215 subjects from 3 sites (UCSF, Mayo, MGH) 140 FTD subjects, 75 control subjects here at MGH: 25 FTD subjects 6 month evaluations over 1.5 years clinical / cognitive assessments brain scans: MRI (and PET at other sites) biofluid collection: blood, urine, CSF NIFD: Enrollment eligibility diagnosis of bvFTD, PNFA, or SD fluent in English 45-90 years old study partner able to undergo multiple MRIs and 2 LPs NIFD: Schedule Month 0 6 12 18 clinical & cognitive assessments X X X X informant questionnaires X X X X MRI X X X X CSF, blood, urine X X NIFD: Goals goals to collect multimodal data (cognitive/behavioral, imaging, biofluids) in a standardized fashion to contribute to a shared database to learn more about the natural history of FTD to learn more about new imaging techniques and biofluid measurements to learn about which information is best for diagnosis, prognosis, and monitoring data collection funded by National Institute on Aging / National Institute of Neurological Disorders and Stroke (NIA-NINDS) 4RTNI: 2012? 4R-Tau Neuroimaging Initiative design parallels ADNI and NIFD natural history study imaging and biofluid collection Tau-based diseases corticobasal degeneration (CBD) progressive supranuclear palsy (PSP) study funded by an anonymous grant from a family of a patient cared for at UCSF