National Alzheimer's Coordinating Center's Uniform Data Set (NACC UDS)
The UDS is one of the three NACC data sets, which comprise records of the patients enrolled at the Alzheimer’s Disease Centers (ADRCs) since the beginning of the program in 1984. The UDS is the only data set with longitudinal data, which has been collected since 2005 by the ADRCs using a prospective, standardised, and longitudinal clinical evaluation of the participants in the National Institute on Aging’s ADRC Program. In each participant’s annual UDS visit, 18 data-collection forms are completed by the clinician, covering topics from participant demographics to neurological examination findings to diagnosis. The NACC has received UDS data from 3,309 participants who were evaluated at the ADCs from September 1, 2005, through June 30, 2006.
Study design
Registry
Number of participants at first data collection
3,309 (participants)
Recruitment is ongoing
Age at first data collection
Varied (participants)
Participant year of birth
Varied (participants)
Participant sex
All
Representative sample at baseline?
Total enrollment of the Alzheimer’s Disease Research Centers (ADRCs) Program since 2005.
Sample features
Country
Year of first data collection
2005
Primary Institutions
National Institute on Aging (NIA)
Profile paper DOI
Funders
National Institute on Aging (NIA)
Ongoing?
Yes
Data types collected
- Computer, paper or task testing (e.g. cognitive testing, theory of mind doll task, attention computer tasks)
- Interview – face-to-face
- Interview – phone
- Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
- Secondary data
- Self-report questionnaire – online
- Self-report questionnaire – paper or computer assisted
- None
- Magnetic Resonance Imaging (MRI)
- Positron Emission Tomography (PET)
- Census data
- Mortality data
Engagement
Keywords
Consortia and dataset groups
