Enhancing Research Collaboration Through a
Common Database for NIA Alzheimer’s Disease Centers

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The Uniform Data Set

The Uniform Data Set (UDS) was implemented across all NIA-funded Alzheimer's Disease Centers beginning September 1, 2005.

For the first time since the beginning of the Alzheimer's Disease Centers Program (est. 1984), all Centers will enroll and follow patients with a common, standardized protocol and provide these pooled data for research through the National Alzheimer's Coordinating Center. During the first year of activation, more than 6,000 new and returning patients and controls are expected to be enrolled with the UDS. With annual follow-up evaluations planned, a large and growing longitudinal database will be accrued for researchers within 2-3 years. The UDS focuses on an expanded description of demographic and clinical characteristics, as well as providing a protocol for assessing and diagnosing Alzheimer's and other dementias using standard criteria.

Uniform Data Set (UDS) content was determined by the ADC Clinical Task Force.

The National Institute on Aging (NIA) received a clear recommendation from an External Advisory Committee, set up to help plan for the future of the Alzheimer's Disease Centers (ADC) Program, to expand and standardize clinical data collected at the ADCs and stored at the National Alzheimer's Coordinating Center (NACC). The NIA decided to implement this recommendation by forming a Clinical Task Force to plan the expansion, define the expanded data set, and recommend a standardized data collection plan for all of the Centers. A key objective was to improve the standardization of clinical evaluation by defining a common set of clinical information collected from all subjects enrolled in the ADCs and transmitted to NACC that goes beyond the simple cataloging of the types of information collected and includes more clinical data. A primary goal is to accumulate a pool of data from which all qualified scientists can draw for basic and applied research projects leading to better diagnostic criteria and treatment options for patients suffering from neurodegenerative diseases.

The ADC Clinical Task Force, chaired by Dr. John Morris (Washington University, St. Louis), has met regularly over the last three years to determine the expanded content of the new Uniform Data Set (UDS) from which NACC, working in close concert with the Task Force, designed data collection forms and constructed a relational database with Oracle and SAS software. The UDS was agreed upon by the Centers in the Spring of 2005. NACC piloted the forms in the summer of 2005, and the new data collection scheme was formally initiated on September 1, 2005. Demographic, Clinical and Pathological data from all subjects enrolled in the ADCs will be entered into the NACC database through the UDS and Neuropathology data sets. The NACC database will be available to all qualified research scientists.

National Alzheimer's Coordinating Center is the repository for the UDS.

The National Alzheimer's Coordinating Center (NACC ) was established in 1999 (U01 AG016976; W. A. Kukull, Principal Investigator). As one of its principal objectives, NACC maintains a Minimum Data Set (MDS) with brief clinical and demographic information about all patients and control subjects (~73,000 total) enrolled in the ADCs plus a detailed Neuropathology data set (NP) on persons receiving autopsy (~8,500), accumulated since the beginning of the Alzheimer's Center Program in 1984. These data are very valuable to characterize the rarer and mixed phenotypes and genetic and ethnic differences, and to begin to identify potential biomarkers which could help to diagnose the different variants, permit characterization of disease course, and to monitor response to treatment.

These data also allow for research on normal aging using control subjects and the transition from normal aging to mild cognitive impairment to AD. However, the data are necessarily assembled retrospectively, primarily cross-sectional rather than longitudinal and are "minimum" by design. Also, all Alzheimer's Centers did not follow a standardized protocol when the MDS data were originally collected, even though the data were reported to NACC in defined data elements. The UDS will not have these limitations; it will be standardized at collection and will be gathered longitudinally so that patient change over time can be observed and analyzed.

NACC will continue to maintain the MDS and NP data, along with the UDS, in a large relational database for researchers to access.

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