UDSv4 Administration Frequently Asked Questions

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

• No, NACC approval is not required for electronic versions of the UDS forms used for primary data collection in the clinics. It is the Centers' responsibility to incorporate form revisions when notified via ADRC listservs or the list of changes found on the second page of each form packet. Please contact NACC Support if you have any questions about EDC.  

Does the MoCA need to be administered at the same time as the other neuropsychological tests, or is it OK to separate them?

• The MoCA need not be administered in the same session as the remainder of the UDS battery; it can be administered one to seven days before the other tests. This information has been added to the Instructions for the Neuropsychological Battery (Forms C2 and C2T).

Does the same person have to administer the MoCA and the rest of the battery?

• No, the MoCA may be administered by a clinician other than the one administering the remaining tests. This information has been added to the Instructions for the Neuropsychological Battery (Forms C2 and C2T).

If someone mishears a word on the MoCA Memory section (say “faith” for “face”) and then at the recall trial they recall the incorrect word (“faith” instead of “face”), should we credit this? 

• When you first read the list, make sure they are looking at your mouth and repeat the correct word. If you accept the incorrect word at the initial trial, you will not be able to cue them appropriately at the delay trial. Therefore, no credit should be given in this instance. 

May we use a letter other than F on the MoCA or the Verbal Fluency F & L test so that we do not administer the same letter twice within a short time?

• No, the letter F verbal fluency test must be administered twice: once for the MoCA and again for the Verbal Fluency test.

May we demonstrate the tapping for the vigilance item on the MoCA?

• The answer is no. If the participant does not understand, you may repeat the entire instruction once. This information has been added to the Instructions for the Neuropsychological Battery (Form C2).

On MoCA, may the participant erase the clock and/or cube drawing and try again?

• In drawing the clock or the cube, a participant may erase his/her work after one or two pencil strokes and start again if they realize they didn't leave enough room or stop for a similar reason. After drawing most or all of the item, however, the participant may not erase and try again. This information has been added to the Instructions for the Neuropsychological Battery (Form C2).

Can you clarify use of the index scoring sheet for MoCA? Is memory not considered an index score?

• Yes, memory is an index score, but it is calculated from three sources: free word-list recall, category-cued recall, and multiple choice. All index scores will be calculated from individual item entry.

Instructions say that for the total MoCA score (Form C2, Question 1F) we should enter the uncorrected score. Should we no longer add a point anywhere for those with 12 or fewer years of education?

• Do not add a point. NACC will do this after the data are submitted so that we can provide both corrected and uncorrected total scores to researchers.

Can you confirm that on Craft Story 21, all verbatim verbiage is ALSO included in the paraphrased scoring sheet?

• Each score (paraphrase and verbatim) should be completed independently. So, yes, if someone provided a bit verbatim (e.g., the name), you should give a point for that bit for both the paraphrase and the verbatim scores. This information has been added to the Instructions for the Neuropsychological Battery (Form C2).

Do you recommend transcribing every word or only flagging the words that are important for scoring for Craft Story 21?

• We received responses from Dr. Suzanne Craft and other neuropsychologists who advise NACC. The practice at their Center is that they transcribe the entire story from an audio recording to easily verify scoring, if any questions arise.

Instructions for the Benson Complex Figure Test specify the use of a pen, not a pencil, which means the participant cannot erase. What if they want to start over? What if they cross out a portion of the drawing and re-draw it – do we just ignore that?

• The participant may start over once and is permitted to write over or cross out their first attempt. If the participant produces more than one figure, ask them which drawing is the final figure for scoring. This information has been added to the Instructions for the Neuropsychological Battery (Form C2).

In the MINT instructions, it says, "For item 27 (Gauge)", where barometer and manometer are acceptable, score alternate as correct and circle the word given by the participant. The testers explained that in an earlier version of the record forms, these alternate names were provided, but they are no longer on the most updated version. I assume we are still supposed to assign a score of 1 for either of these alternative answers even though they are not written on the form for the examiner to circle.

• We have incorporated a list of acceptable alternatives for three items on the MINT. Please assign a score of 1 if any of the alternative answers are provided by the participant.

In the cueing section of the MINT instructions, third paragraph, it says, "Sometimes a participant will give a response that indicates lack of visual recognition of the object, that is, misperception (e.g., focusing only on the flame at the top of the candle and saying "fire" or misperceiving the twigs in the nest and saying "hair"). In that instance, a semantic cue should be given." It seems that the example about the flame would be more appropriately cued in accord with Prompt 6 on the following page, where the participant is said to focus on one part of the picture, or the wrong part of the picture, leading the examiner to prompt, "What is the whole thing called?". Can you please say which of these two prompts would be provided?

• The flame is a good example of failure of visual recognition (e.g., simultanagnosia). Certainly, the flame could also represent a part-whole/executive type error but also a visual misperception. Please use your best judgment.

How do we score the Verbal Naming Test? 

• Form C2T Question 14b (i.e., Total correct with phonemic cue) is the sum of correct responses with a phonemic cue provided. It is not the sum of correct responses with and without a phonemic cue. The sum of Question 14a (i.e., Total correct without a cue) and 14b should not exceed 50. 

How can we distinguish distractions from interruptions? 

• It can be difficult to determine this remotely. Occasionally, someone at the participant’s home interrupts (you may hear them speaking in the background, for instance). When permitted by the Neuropsychologic Battery Instructions, we suggest repeating. However, it is also important to ask participants before starting if they are alone in a quiet spot where they will not be disturbed. 

How should we determine inability to proceed?

• The same cut-offs are used for C2 tests, and others are specified for new tests (i.e., Oral Trail Making Test). For other tests, experienced examiners should use the same considerations for discontinuing (frustration, refusal to continue, etc.). 

How much repetition is permitted?

• Guidelines for interviewers are given in the Neuropsychological Battery Instructions. For tests that have been part of the UDS battery, the guidelines have not changed. 

How should we handle high GDS scores? 

• The script provided in the Neuropsychologic Battery Instructions is offered as one way to deal with this situation. Each Center should adopt and implement its own procedures, if these are not already in place. 

May we add tests to the battery?

• Yes, Centers may add tests (e.g., MINT or Benson, important for FTLD). However, as always, the tests must be administered separately. The T-cog Battery must be given in the established order, with no site-specific tests interspersed. 

Will Verbal Naming be translated? 

• This test is difficult to translate into Spanish because of regional variations in the language. Fortunately, the core tests are already available in Spanish (only). 

Can Centers who have administered other forms of the RAVLT or other VLTs continue to do so? 

• Use of a verbal learning test (either RAVLT or CERAD) is required, and standardized RAVLT instructions are provided as part of the C2T (T-cog) Battery, but Centers can employ alternate forms of the RAVLT or other VLTs. Centers should locally document the specific alternate tests and forms that they administer. 

Is there a discontinuation rule for the Verbal Naming Test? 

• The CTF recommends discontinuing testing after six consecutive failures (i.e., failure to name correctly without assistance or with a phonemic cue). This guidance is similar to the discontinuation criteria for the Boston Naming Test and Multilingual Naming Test and has been added to the C2T (T-cog) instructions. 

What should we say to a participant if they make a mistake during the Oral Trail Making Test? 

• The CTF has recommended the following instructions, which have been added to the C2T (T-cog) instructions: 

  • If the patient makes an error on Part A, the examiner is to reorient them to the last correct number by saying: “You last said ‘[specific number],’ please continue from there.” 

  • If the patient makes an error on Part B, the examiner is to reorient them to the last correct pair by saying: “You said ‘[specific number] [specific letter];’ please continue from there.” 

Q12 - 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 to this question. “Lives with a group (related or not related) in a private residence” is the best answer in this case.

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

• Record the name of the medication as the participant is actually taking it. It is possible that they are not taking the medication as originally prescribed or as written on the prescription bottle. It is helpful when participants bring their medications to the research assessment, so more complete information is obtained. If they do not bring their medications or a list to the assessment, telephone follow-up may be necessary.

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

• Over the counter and PRN medications do not need to 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 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.

Should we assume that the breadth of the behavioral symptoms should 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 any cognitive domain at this UDS visit. It does not matter if he or she was enrolled in the ADRC as a control. If the participant now reports a decline in any cognitive domain, select 1=Yes.

Q8, Q11, Q14 – 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 9a–i, 12a–u, and 15a–h to answer Questions 8, 11, and 14. In other words, the clinician should skip Questions 8, 11, and 14, and return to them after reviewing the rest of the form.