QUALITY ASSURANCE AND THE NACC DATABASE

The UDS data-collection protocol

The UDS data-collection protocol requires the following:

• The majority of subjects at an ADC should be followed longitudinally.
• Assessments are to be obtained annually.
• Clinical diagnoses should be consistent with the criteria listed in UDS Form D1.
• Neuropsychological tests must be conducted in the prescribed order, using the standardized testing instructions.
• All subjects (including non-demented controls) must be accompanied by an informant at the initial visit, and every effort should be made to have an informant present for each follow-up visit.
• The UDS is required to be administered at Centers as a standard protocol, separate from other protocols that may have been developed for administration at individual ADCs.
• All forms should be attempted on all subjects; however, when a subject is terminally ill, or where other extenuating circumstances prevent completion of the UDS in its entirety, only Forms Z1, A1, A5, B4, B9, C1, and D1 are required.

For more information about the development of UDS protocol and the resulting assessment procedures, see Morris et al., 2006.

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