Email lpt.research@nhs.net to find out more about the studies below.
Enroll-HD, Huntington's disease
Enroll-HD is a worldwide observational study open to people with, or at risk of, Huntington’s disease (HD).
Enroll-HD is a resource for all Huntington’s disease research, which aims to understand the experience of those living with HD and how the disease changes over time. This study aims to better understand the disease as it happens in people, to hopefully provide insights into new drugs or treatments for HD. The Principal Investigator for this study is Dr Reza Kiani. You can find out more here: https://www.enroll-hd.org/
GUIDE-HD, Huntington's disease
GUIDE-HD hopes to investigate whether a new talking therapy aimed at reducing anxiety for Huntington’s disease gene carriers could be beneficial.
Anxiety is a distressing problem experienced by around 71% of Huntington’s gene carriers. Anxiety damages quality of life and can worsen other Huntington’s symptoms. Guided self-help can help people who are anxious, and involves offering people information on how to manage their anxiety, and providing therapy sessions by telephone, video-conferencing or email. GUIDE-HD is a feasibility trial of a new talking therapy to see what people think about the therapy, and the project design, before undertaking a larger study involving more participants. The Chief Investigator for this study is Dr Maria Dale.
HealthE-RND, Neurodegeneration and Huntington's disease
HealthE-RND aims to develop an eHealth platform to improve quality of life in people affected by rare diseases.
Over 3 years the study team aims to develop an eHealth platform and a quality of life questionnaire. The study is being carried out in 6 European countries, focusing on HD in the first instance, to study whether the platform is useful. HeathE-RND is led by Dr Maria Dale in LPT. You can find out more about this study here: https://healthe-rnd.eu/
iMARK-HD, Huntington's disease
iMARK-HD is a study designed to assess changes in the brain as a result of Huntington's Disease using two types of imaging scans, PET and MRI.
The main purpose of this study is to find a biomarker for HD using imaging scans. A biomarker is an indicator of the presence of a disease or a condition, that can be measured, and that is able to give information about the progression, or severity, of this condition. There is currently no biomarker identified for HD. Finding a biomarker may assist in the development of a treatment. The Principal Investigator for this study in Dr Reza Kiani.
The information on this page is correct as of January 2023.