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. 2022 Feb 14;269(7):3501–3510. doi: 10.1007/s00415-021-10929-4

Table 1.

Enroll-HD assessments used in the analysis

Scale Measurement capturing Items used Outcome measure
Unified Huntington’s disease rating scale-total motor score [24] Motor features of HD All Total score: 0–124
Unified Huntington’s disease rating scale – total functional capacity Daily functioning Item 2: What is your level of functioning: finances 0 = unable, 1 = major assistance, 2 = slight assistance, 3 = normal
Unified Huntington’s disease rating scale – functional assessment Daily functioning Item 2: Could the participant manage his/her finances (monthly) without any help 1 = yes or 2 = no
Mini-mental state exam [26] Global Cognition All

Total score: 0 – 30

 < 24 = dementia cut-off

Symbol digit modality (SDMT) [24] Processing speed All Total number of symbols decoded in 90 s
Verbal fluency (VF) (Animal Naming) [24] Language/executive function All Total animal words generated in 60 s (excluding repetitions or perseverations)
Stroop naming, word, interference [24] Executive function All Total number of blocks verbalised in 45 s for each stage (colour naming, word reading, interference)
Trail-making A and B [27] Executive function All Time take to complete task
Problem behaviour assessment (PBA) – short version Psychiatric features of HD Item for depression, irritability and apathy

Frequency: 0–4

0 = never/almost never 1 = seldom (less than once/week) 2 = sometimes (up to 4 times a week) 3 = frequently (most days/5,6 or 7 times a week) 4 = daily/almost daily for most (or all) of day

Severity: 0–4

0 = absent 1 = slight, questionable 2 = mild (present, not a problem) 3 = moderate (symptom causing problem) 4 = severe (almost intolerable for carer)