Development of Assessments for Later Stage Huntington's Disease: UHDRS Structured Interview of Function and HD Clinical Status Questionnaire

Research summary

The main purpose of this study is to develop measures that capture how Huntington's disease (HD) affects an individual's health and well-being, specifically during the stage of the disease when people have had signs and symptoms for several years. It will also be important to see whether these measures can be completed by the companion participant (either in-person or remotely, e.g. phone) on the HD participant's behalf. The study is made up of two parts. Part 1 will evaluate a modified questionnaire called the Unified Huntington's Disease Rating Scale Structured Interview of Function (UHDRS SIF). Part 1 will be run in the USA only. Part 2 will evaluate a new questionnaire called the Huntington's disease Clinical Status Questionnaire (HDCSQ) and the UHDRS SIF. Part 2 is being conducted in the UK and the USA. The Later Stage HD Assessments study (Parts 1 & 2) is for HDGEC participants and their companions. HDGEC participants must have; - tested positive for the genetic mutation that causes HD - have a confirmed diagnosis of HD - have shown signs and symptoms of HD for several years - be participating in the Enroll-HD study - have a companion who is also willing to participate in this study. Companion participants must; - be a companion of a HD participant - In their opinion, have regular contact with, and have enough knowledge of the HD participant's capabilities - be acceptable to the HD participant and the study site investigator. Part 2 of this study has two visits. A Baseline visit (HDGEC participants and companion participants) and a Follow-up visit (companion participants only). The baseline visit will be conducted at the same place as the Enroll-HD study visits and the follow up visit will be conducted by telephone.

Principal Investigator

Dr Richard Armstrong

Contact us

Email: dendron@ouh.nhs.uk

IRAS number

275321