QUALITY ASSURANCE AND THE NACC DATABASE

The UDS data-collection protocol

The UDS data-collection protocol requires the following:

• The majority of participants at an ADC should be followed longitudinally.
• Assessments are to be obtained annually.
• Clinical diagnoses should be consistent with the criteria listed in the current version of UDS Form D1*. *Links to current version of form (UDS3)
• Neuropsychological tests must be conducted in the prescribed order, using the standardized testing instructions.
• It is strongly encouraged that all participants (including cognitively normal participants) be accompanied by an co-participant at the initial visit, and every effort should be made to have a co-participant 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 participants; however, when a participant is terminally ill, or where other extenuating circumstances prevent completion of the UDS in its entirety, only Forms Z1X, A1, A5, B4, B9, C2, D1, and D2* are required. *Links to current version of forms (UDS3)

For more information about the development of UDS protocol and the resulting assessment procedures, see Morris et al., 2006 and Besser, 2018.

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