Email lpt.research@nhs.net to find out more about the studies below.
Enroll-HD is a worldwide observational study open to people with, or at risk of, Huntington’s disease (HD). It aims to understand the experience of those living with HD and how the disease changes over time. This study has been open in LPT for over 10 years, there are currently 120 participants in this study in the Trust.
PI: Dr Reza Kiani.
R&D Delivery Team: Dawn Freire-Patino, Joy Fellows
GUIDE-HD is a randomised controlled feasibility trial to see whether a new talking therapy which aims to reduce anxiety among Huntington’s Disease gene expansion carriers could be beneficial. This study is led by Chief Investigator Dr Maria Dale in LPT and is jointly run with Lancaster University and the EHDN Psychological Interventions and Approaches Working Group. The work is funded by the Jacques and Gloria Gossweiler Foundation.
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 currently focusing on Huntington’s disease, to study whether the platform is useful. You can find out more about HealthE-RND here: https://healthe-rnd.eu/
PI: Dr Maria Dale
R&D Delivery Team: Dr Sarah Baillon, Dawn Freire-Patino, Joy Fellows
iMark-HD is a study looking for an indicator that can give information about the progression of HD by using MRI scans (which observes the structure of the brain) and PET scans (which observes the function of the brain). By observing these indicators, researchers can better understand how the disease develops. This work could potentially lead to further research into early diagnosis and treatments.
PI: Reza Kiani
R&D Delivery Team: Dr Sarah Baillon, Dawn Freire-Patino, Joy Fellows
The Later Stage HD Assessments study aims to develop two assessments that can be used to measure critical milestones and events during the later stages of Huntington’s disease (HD). Participants in the LSA study will be both people diagnosed with HD and their companions, who are participants in the Enroll-HD study.
PI: Reza Kiani
R&D Delivery Team: Dr Sarah Baillon, Dawn Freire-Patino, Joy Fellows
The information on this page is correct as of November 2023.