First patient in the UK recruited to new study for Huntington’s disease

Leicestershire Partnership NHS trust (LPT) is the first in the UK to recruit a patient to a new study aimed at developing tools to assess the impact of Huntington’s Disease (HD) on the health and well-being of affected individuals. 

HD is a hereditary disorder that causes progressive damage to nerve cells in the brain, impairing their function. This deterioration becomes worse over time, impacting movement, perception, cognition, judgement, and mental health.

The Later Stage HD Assessment Study will focus on people who have exhibited signs and symptoms of HD for several years. As HD progresses, individuals become increasingly dependent on caregivers, making attending study visits and traditional assessments impractical. Therefore, there is a need to develop remotely delivered tools for the later stages of HD, which do not currently exist. 

Sponsored by CHDI Foundation (previously known as Cure Huntington’s Disease Initiative) and supported by the National Institute for Health and Care Research (NIHR), two measures have been developed to investigate the impact of HD: the Huntington’s Disease Structured Interview of Function (HD-SIF) and the Huntington’s Disease Clinical Status Questionnaire (HDCSQ). These assessments are reported by a caregiver via telephone and include questions on the HD participant’s symptoms and how they affect daily life. 

Joy Fellows Davis, HD Clinical Research Practitioner at LPT states:

“Being the first UK Site to recruit a participant into the study is a huge honour, however not without its challenges, including delays in study set-up and approvals. The central study team has been a great support and we work closely with them to provide regular feedback that will benefit the set-up of additional UK sites.

Our ENROLL-HD cohort are extremely enthusiastic about taking part in research. We are so appreciative of them, and want to be able to provide every opportunity we can for them to participate in studies, such as this.

With every bit of data we collect we hope that it will lead to a better understanding of HD, improved HD treatments and  improved quality of life for those affected by HD.”

The study is recruiting across the USA and UK, with approximately 10 sites in the UK. 

Taking part in health and care research is easy. Simply register your details on the Be Part of Research website and tell us the health conditions you’re interested in. You can then decide whether you want to take part. You can also click here to find out how you can get involved in ENROLL-HD.