Adult Changes in Thought - Biorepository: Clinical Core

Kaiser Foundation Research Institute, Oakland CA

Investigators

Linked publications & trials

Abstract

SUMMARY The overarching goal of the Clinical Core (Core B) is to collect data in support of the Adult Changes in Thought (ACT) U19 Program Projects, Cores, and ancillary studies. The Clinical Core is responsible for participant communication and data collection, and coordinating with other Projects and Cores that include data collection activities. A scientific challenge the Clinical Core must address is maintaining backwards compatibility while facilitating data collection using more modern methods and maintaining harmonization with companion studies. These considerations inform all aspects of the Core’s activities. The Core’s Specific Aims are: (1) Follow and retain current ACT participants. Refinements in the U19 Program include digital capture of extensive information on cognition beyond that previously collected using traditional approaches. The Clinical Core will continue data collection from home-based visits, an essential design characteristic for cohort retention. It will: (1a) expand, modernize, and improve established ACT data collection to follow cognition, physical function, interval changes in risk factors, health and social status, and continue to identify incident cases of dementia and Alzheimer’s disease (AD); (1b) support proposed Projects and Cores and ACT-related affiliated studies with targeted new data collection, adding new processes to digitize and modernize cognitive tests. (2) Enroll, follow, and retain new ACT participants. The Clinical Core plans to increase enrollment from 2,000 to 3,000 active dementia-free individuals. We will increase our geographic reach to include more sociodemographically and racially/ethnically diverse areas in the greater Puget Sound area and will oversample racial/ethnic minorities to achieve a goal of over 20% racial/ethnic minority enrollment. (3) Obtain, process and store blood samples on ACT participants. ACT will establish a blood-based biorepository to enable future proteomic and transcriptomic research, and to measure current established plasma biomarkers of AD pathology. (4) Acquire and maintain antemortem autopsy approval and enhance communication with participants and their families to optimize postmortem intervals for decedents who come to autopsy. The ACT study’s extensive infrastructure has led to 1000 autopsies from the ACT cohort. The Clinical Core works closely with the Neuropathology Core to use continuous quality improvement approaches to maximize the proportion of consenting decedents who receive a rapid autopsy. (5) Coordinate with the Administrative and Data and Analysis Cores to ensure state- of-the-art quality control and data documentation of all data collected by the Clinical Core. The Clinical Core builds on >25 years of data collection from a population-based cohort of older adults and will expand, modernize and improve data collection; grow the cohort, increasing racial/ethnic and sociodemographic diversity; and provide outstanding support for Projects, Cores, and affiliated studies. The addition of a blood- based biorepository through this Revision will substantially increase ACT’s value to the research community, and its contributions to scientific understanding of aging, dementia and AD.