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) |