Cognitive domain and test selection were based on a combination of methods evolving from regular meetings of the CTF. A subcommittee was formed to specifically undertake the design of the neuropsychological test battery, to bring essential issues to the larger group and to interface with the ADCs. Three overriding criteria governed decisions for selecting domains and tests. The first was the mandate for the UDS to initially focus on cognitive markers of aging and of dementia associated with AD, the second was to minimize burden on the ADCs and their subjects, and the third was to accommodate the continuity of measures that ADCs have previously collected. A fourth principle that emerged after an initial set of domains and tests was identified was the need to overlap with other ADC initiatives such as the Late Onset Alzheimer’s Disease (LOAD) Genetics study and the Alzheimer’s Disease Neuroimaging Initiative (ADNI). Because of the need to focus on the cognitive continuum from aging without dementia, to MCI, to AD, cognitive domains were selected for their sensitivity to age-related change in cognition [17 (link)–29 (link)] sensitivity to the demonstrated primary cognitive impairments in AD [30 –36 (link)], ability to measure change over time and to stage AD [37 (link)], and ability to predict progression from MCI to AD [38 (link)–41 ]. Additional criteria for test selection included applicability of the measures to different educational levels, to diverse racial/ethnic minority groups and to Spanish-speaking populations. A Spanish translation of the UDS has been completed and is available on the NACC website (https://www.alz.washington.edu ).
The minimization of burden, an issue of feasibility, had to figure centrally in test selection. Many ADCs have been conducting research for over 20 years. Well-established protocols and longitudinal research projects could be disrupted by the need to significantly alter assessment and enrollment methods, notwithstanding the added time burden for subjects and their study partners. Thus, with input from the ADCs, the CTF concluded that the neuropsychological battery should not add more than 30 minutes to existing protocols at each Center. One implication of this principle was that tests already in use by all or most ADCs would be high on the list of candidates for inclusion.
The CTF conducted several surveys of the ADCs to gather data about their ongoing assessment practices including, among other variables: 1) cognitive domains tested; 2) specific instruments and versions, for tests with multiple forms; 3) populations of subjects followed (i.e., disease and control groups; clinic and/or community samples); 4) frequency of subject visits. Once these data were acquired, the most commonly tested domains and the most commonly used specific measures were identified and comments and approval were solicited from the ADCs.
The minimization of burden, an issue of feasibility, had to figure centrally in test selection. Many ADCs have been conducting research for over 20 years. Well-established protocols and longitudinal research projects could be disrupted by the need to significantly alter assessment and enrollment methods, notwithstanding the added time burden for subjects and their study partners. Thus, with input from the ADCs, the CTF concluded that the neuropsychological battery should not add more than 30 minutes to existing protocols at each Center. One implication of this principle was that tests already in use by all or most ADCs would be high on the list of candidates for inclusion.
The CTF conducted several surveys of the ADCs to gather data about their ongoing assessment practices including, among other variables: 1) cognitive domains tested; 2) specific instruments and versions, for tests with multiple forms; 3) populations of subjects followed (i.e., disease and control groups; clinic and/or community samples); 4) frequency of subject visits. Once these data were acquired, the most commonly tested domains and the most commonly used specific measures were identified and comments and approval were solicited from the ADCs.
