UDS 3 Frequently asked questions

General

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

NACC's 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.

Neuropsychological battery

Do Centers need to set up their own licensing agreements to continue using the neuropsychological battery from UDS2?

NACC has purchased enough UDS2 neuropsychological administrations to give ADCs the option of using UDS2 for follow-up through February 2017. After that, Centers that want to keep using the UDS2 battery will need to set up their own licensing agreements for the following tests:

  • WAIS-R Digit Symbol
  • WAIS-R Digit Span
  • WMS-R Logical Memory I
  • MMSE
  • BNT (30 odd-numbered items)

NOTE: Centers are required to use the neuropsychological battery reported on Form C2 for all participants who enroll in the UDS on or after March 15, 2017.

Does the MoCA (or the MMSE) 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. The same is true of the MMSE. This information has been added to the Instructions for the Neuropsychological Battery (Forms C1 and C2).

Does the same person have to administer the MoCA (or the MMSE) as is giving the rest of the battery?

No, the MoCA may be administered by a clinician other than one giving the remaining tests. The same is true for the MMSE. This information has been added to the Instructions for the Neuropsychological Battery (Forms C1 and C2).

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?

Dr. Weintraub spoke with Dr. Nasreddine about this, and 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 (Forms C1 and 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 1 if any of the alternative answers are provided by the participant.

In the cuing 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.

Initial Visit Packet

General UDS

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.

Form A1 (Participant Demographics)

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.

Form A4 (Participant Medications)

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 need not be listed unless they are among the 100 listed on Form A4.

Form A5 (Participant Health History)

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.

Form B5 (Behavioral Assessment – NPI-Q)

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.

Form B7 (Functional Assessment — FAQ)

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.

Form B9 (Clinician Judgment of Symptoms)

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.

Form D1 (Clinical Diagnosis)

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.

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NACC is funded by the National Institute on Aging (U24 AG072122) and located in the Department of Epidemiology at the University of Washington School of Public Health, Walter A. Kukull, Ph.D., Director. © 2021 University of Washington