Alzheimer's Disease Core Center (ADCC)

Project: Research project

Description

The Arizona ADC Data Management and Statistics Core (DMSC) is responsible for maintaining the data acquisition and integration infrastructure for the Arizona ADC, assuring overall data quality and conformance to the UDS, facilitating the accessibility to data for designated investigators, and developing novel methods for data and image analysis in order to advance research on age-related dementia and cognitive decline. The Arizona ADC is different from other sites around the nation in that it consists of 7 coordinated sites around the state, submitting a unified set of subject records to NACC. Current funding for the core has allowed continuous service to all sites and responsiveness to NACC, plus moderate improvements of the Microsoft Access system that integrates UDS-compliant data from seven clinical sites around the State of Arizona. Alzheimers disease is a slowly progressive disorder, where clinical features range from subtle decline in motor skills to marked behavioral changes. Clinical features are instrumental for diagnosis, and common features include, aphasia, apraxia, and agnosia, together with general cognitive symptoms, such as impaired judgment, decision-making, and orientation. (Blennow, de Leon,& Zetterberg, 2006). This supplement seeks to study methods in analysis and mining that would enhance our capacity to exploit the rich longitudinal data from the UDS data set and respond to the changing research environment and that go beyond what is currently covered by the center funding. Specific Aims: Funding is required to 1) explore and design data mining methods that would allow a thorough assessment of the predictive value of the distinct data points present in our center data and that at NACC, including handling of incomplete and longitudinal data, and 2) expand our portfolio of statistical methods to include linear mixed models with random effects to analyze longitudinal and clustered data.

Description

The Arizona ADC Data Management and Statistics Core (DMSC) is responsible for maintaining the data acquisition and integration infrastructure for the Arizona ADC, assuring overall data quality and conformance to the UDS, facilitating the accessibility to data for designated investigators, and developing novel methods for data and image analysis in order to advance research on age-related dementia and cognitive decline. The Arizona ADC is different from other sites around the nation in that it consists of 7 coordinated sites around the state, submitting a unified set of subject records to NACC. Current funding for the core has allowed continuous service to all sites and responsiveness to NACC, plus moderate improvements of the Microsoft Access system that integrates UDS-compliant data from seven clinical sites around the State of Arizona. Working with interested NIA Alzheimer's Disease Centers (ADCs) across the country, NACC is now collecting data specific to frontotemporal lobar degeneration (FTLD) as a"module" to its Uniform Data Set (UDS). The FTLD Working Group (David Knopman, MD, Chair) of the ADC Clinical Task Force - made up of FTLD clinicians and researchers from the ADCs - has formulated a standardized clinical evaluation from which NACC has developed data-collection forms and database structure for the new FTLD Module. The module supplements the UDS data collection already in place and will be administered to persons with suspected FTLD-spectrum disorders at participating ADCs, as well as control subjects at the Centers' discretion. This initiative has been launched with the support of the National Institute on Aging, the National Institute of Neurological Disorders and Stroke, and the Association for Frontotemporal Dementia The Arizona Alzheimers Disease Center volunteered to collect this data, and is now doing so at its different sites, with data being uploaded manually to NACC. The overall aim of this work is to supplement the current capacity of the core in order to develop the local database infrastructure to support automatic data integration and export of the FTLD module data, and bring it up to the level that we have for the rest of the UDS forms. Specific Aims: Funding is required to 1) develop the necessary forms (a total of 13 forms with 460 data elements in 33 pages plus 4 pages of instructions, with variants for the follow-up and telephone packets) on the Microsoft Access platform currently in use at the Arizona sites, including automatic validation of each of the 460 data elements, 2) develop the necessary code to integrate and export the collected data to NACC by expanding current functionality of the existing infrastructure, and 3) test and deploy the new forms at each site, including adding necessary code to export them along with the existing UDS battery.
StatusFinished
Effective start/end date8/1/116/30/16

Funding

  • HHS-NIH: National Institute on Aging (NIA): $842,674.00

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dementia
funding
infrastructure
supplement
data acquisition
data quality