The research populations covered by the UCI ADRC database
UCI ADRC serves as a repository for data collected at the UCI MIND Memory Assessment Clinic. Memory Assessment Clinic provides clinical evaluations and diagnosis, recommendations, and treatment plans. The Memory Assessment Clinic also provides many opportunities for participation in research, but is not a continuing care program. The UCI ADRC is also one of the 30 different Alzheimer’s Disease Centers (ADCs) that are associated with the National Alzheimer’s Coordinating Center (NACC) database. Through it’s involvement with the NACC, the ADRC collects and maintains a Uniform Data System (UDS) that is stored locally at the UCI ADRC and transmitted monthly NACC database. All data that are transmitted to the NACC are locally housed within the UCI ADRC DMSC and available to for investigator use. For data requests, see the Request ADRC Data page.
The NACC database
The NACC database has evolved over time to incorporate changes in the type and amount of information obtained on ADC cohorts. The three main data research sets available from NACC are summarized in the table below. For additional information on the data maintained by the UCI ADRC, including data collection forms and codebooks to standard analysis files, see the Researcher’s Guide page.
| Minimum Data Set (MDS) |
Uniform Data Set (UDS) | Neuropathology Data Set (NP) |
|
| Years covered by UCI | 1988 – 2005 | Sept. 2005 – present | 1988 – present |
| Study subjects | Enrollees followed at the UCI ADRC clinic (with or without dementia) |
Enrollees followed at UCI ADRC clinic (with or without dementia) |
Subjects who died and underwent autopsy. The NP data set includes patients from the UCI ADRC clinical cohort as well as community patients and patients from MIND special studies including the 90+ cohort and the Down Syndrome cohort |
| Approx. # of subjects at UCI* | 781 | 642 | 290 |
| Approx. # of variables | 67 | 725 | 85 |
| Method of data collection |
Mainly abstracted retroactively from ADC medical records | Collected prospectively by clinicians, neuropsychologists, and other ADC research personnel, using up to 18 standardized forms at each visit. Some forms also have Spanish-language and telephone versions. |
Standardized neuropathology form, completed by neuropathologist |
| Time period covered for each subject | Mainly status on last ADC visit; some variables also capture initial-visit status | Initial visit and each annual follow-up visit, plus milestones such as death or dropout |
Status of brain at autopsy |
| Topics covered (brief list) |
Demographics, cognitive status, clinical dementia diagnosis, selected clinical manifestations, comorbid conditions, MMSE score, vital status, primary neuropathological diagnosis (if died and had brain autopsy) | Sociodemographics on subject and informant, family history, dementia history, neurological exam findings, functional status, neuropsych-ological test results, clinical diagnosis, whether imaging testing done, ApoE genotype | Demographics, date of death, primary and secondary neuropathological diagnoses, presence/absence of neuropathological features of most major dementias, ApoE genotype, brain weights |
| Publications describing data set |
Beekly, 2004 | Morris, 2006 Beekly, 2007 Weintraub, 2009 |
Beekly, 2004 |
updated 2018-04-19