UDS 3 Frequently asked questions

Does a Center need approval to create or edit its own electronic data entry forms (eForms)?

NACC approval is required for electronic versions of the UDS forms, used for primary data collection in the clinics. Re-certification by NACC is not required for small changes and updates. It is the Centers' responsibility to incorporate form revisions when notified via ADC listservs or the list of changes found on the second page of each form packet. A new recertification is required when a new version of the forms is developed, for example version 2 to version 3. Please contact NACC (nacc_help@uw.edu) if you have any questions about eForms and the approval process.

What is the UDS policy on co-participants?

Co-participants are expected for all cases and control participants enrolled in the UDS. Please do your best to identify a reliable co-participant for the participant. If a local co-participant is not available, you can contact a long-distance co-participant. The co-participant needs to be one individual (not a group of friends or family members) who is considered the best source of information about the participant available. However, in very exceptional instances (e.g., if the participant refuses to supply a co-participant or there is no co-participant available), the participant can still be enrolled in the UDS.

Q3 – If the participant entered the Center as a control but now many years later is the case, how do we answer?

This question is a bookkeeping item and refers to the presumed case/normal control status at enrollment into the UDS (regardless of whether this is the first or 10th assessment). Presumed status is what the assessment staff thinks the participant is just prior to the initial UDS visit evaluation. If a participant is thought to have MCI, select 1=Case/patient/proband.

Q15 – If there are several people living in the home who are involved with the participant, could more than one choice be checked?

No, there can be only one response for this question. “Lives with a group (related or not related) in a private residence” is the best answer in this case.

Q16 – We have many persons living in retirement facilities who have their meals provided and their cleaning done for them. If a person lives in a board-and-care facility and meals are provided, would you choose answer #3 (“Requires some assistance with basic activities”)?

This question seeks to capture the level of activity the participant is able to perform. If the participant is able to do complex activities but is not doing the activities because of his/her living situation, the participant is still considered able to live independently. If the participant is impaired, this question is asked of the co-participant. The examples in the guidebook can be helpful in clarifying the intent of the question to the participant or co-participant.

Should we record what medications are prescribed for the participant – or what medications the participant is actually taking?

Do all over-the-counter and PRN medications need to be reported on Form A4?

Over-the counter and PRN medications need not be listed unless they are among the 100 listed on Form A4.

Q1a – There is no place to record the use of snuff or chewing tobacco. This is more common in some of our rural areas than is cigarette use.

This question is limited to cigarette smoking. If you are interested in capturing chewing tobacco, snuff, etc., please do so on a separate non-UDS form.

Is it to be assumed that the breadth of the behavioral symptoms is to be confined to the specific examples, or are we to expand clinical judgment about behaviors that are varied and yet fit the category?

It is appropriate to rate behaviors that fit the category but may not be noted specifically in the example. For example, on Question 2, Delusions, the examples relate to false beliefs about “stealing” and to “harm in some way,” but we know that Aloïs Alzheimer’s initial patient, Auguste D, presented with a delusion of spousal infidelity. That certainly should be rated under Question 2.

Q3 – Is the question on hallucinations focused on a specific type of hallucination?

No, please report both auditory and visual hallucinations newly experienced by the participant in the past month.

There is no “total” for this form; should there be?

The FAQ Form does not have a summary score.

Should one interpret “dependent” to mean that the participant cannot do this at all – that someone else has to do it?

If the co-participant indicates that the participant no longer does a particular task, it is reasonable to probe further and ask whether the co-participant thinks the participant still could do the task. This will help tease out the relevant functional impairment.

Is a chart review of all past medical records needed?

It is not necessary to review records from previous visits. The intent is that you re-ask the question rather than review your original charts.

Q1 – If the participant entered the Center as a control and sometime after enrollment developed memory problems, how do you want this answered?

We are interested in whether the participant is reporting a decline in memory at this UDS visit. It does not matter if he or she was enrolled in the ADC as a control. If the participant now reports memory problems, select 1=Yes.

Q3, Q8, Q13 – What information should the clinician use to determine whether meaningful decline exists?

The clinician should refer to medical records and clinical observation. If still uncertain whether there has been a meaningful decline, he/she should use the information gleaned from the co-participant in Questions 4a–h, 9a–j, and 14a–d to answer Questions 3, 8, and 13. In other words, the clinician should skip Questions 3, 8, and 13, and return to them after reviewing the rest of the form.

Q2 – If the participant has normal cognition, why do you skip to Question 6?

Persons with normal cognition, by definition, cannot have dementia or MCI (Questions 3 – 5e). However, they can have other conditions (e.g., Parkinson’s disease, stroke) at the time of the exam. It is important to collect data on these conditions even in participants with normal cognition because they could also show increased risk of cognitive impairment in the future and it will aid in more precise definition of the “controls.”

How should motor signs be reported for a patient who has been diagnosed with AD but who has now developed tardive dyskinesia (or similar motor signs/symptoms) apparently secondary to treatment with phenothiazines (e.g., Thorazine)?

If the phenothiazines are not causing cognitive impairment, indicate motor symptoms due to phenothiazine use on Form D2, Question 23.