The Clinical core (core B) will continue to support studies into neurodegenerative disorders occurring on Guam, including amyotrophic lateral sclerosis (ALS), Parkinson's Dementia Complex (PDC) and late-life dementia clinically resembling Alzheimer's Disease (AD). Detailed clinical characterization of patients and controls on Guam, accurate clinical diagnoses, collection of data using standardized rating scales, obtaining blood samples (including DNA), obtaining longitudinal follow-up, coordinating structural MR studies of the brain, and arranging autopsy procurement of brain tissue are essential to support a variety of scientific projects investigating risk factors and mechanisms of disease.
Specific aims of core B in this renewal are: 1) Recruit Chamorros aged 65 and older on Guam to support epidemiological and other studies; 2) screen subjects for cognitive, motor and functional abilities, conduct clinical, neurological and neuropsychological assessment of participants who meet criteria for detailed evaluation in the proposed prevalence and incidence studies; 3) establish clinical diagnoses; 4) Continue to follow existing patients with ALS, PDC and Marianas Dementia, and evaluate and follow new patients with these disorders; 5) Recruit subjects to undergo research MRI studies; 6) collect, store, and ship blood and CSF specimens; 7) obtain autopsy consent, and assist in brain autopsies and preparation of tissue, storage and shipment; 8) data acquisition and management.; 9) supervise staff and maintain quality assurance of procedures and data; 10) provide consultation for study participants and their families and caregivers; 11) liaison with health care providers and government agencies; 12) carry out education and training. core B will consist of staff based on Guam, directed by Ulla-Katrina Craig, whose activities are critical to the entire Program, including recruitment, screening, evaluation and follow-up of patients, and data entry. Neurologists and a neuropsychologist at UCSD and a neurologist at OHSU will travel to Guam regularly to perform neurologic and cognitive examinations.
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