Huntingdon's Current Research

Enroll-HD is a prospective observational multicentre multi-national cohort study to be conducted in multiple native languages. Study visits will take place yearly and may occur at the time of the participant’s routine clinical care visit, where possible. The goal of Enroll-HD is to build a large and rich database of clinical information and biospecimens that will serve as a basis for future studies aimed at developing tools and biomarkers for progression and prognosis, identifying clinically relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies.

Principal Investigator: Dr Elizabeth Couthard
Planned End Date: Open ended
Local Ref: 3553

Enroll-HD (study explained above) is also a clinical research platform that supports other HD studies. Anyone participating in Enroll-HD study who have been confirmed to have the HD gene expansion are invited to take part in HDClairity.

HDClarity is looking at the biomarker, Cerebrospinal fluid (CSF). A biomarker is a biological measure that captures what is happening in a cell or organism at that given moment. These play an important role in understanding biological processes and understanding relationships between environment exposure, human biology and disease. CSF is an extremely useful biosample since it directly surrounds the brain and so likely reflects what is happening there throughout the course of disease. HDClarity is an open-ended study (no set end date) with CSF collection encouraged every year.
 

Principal Investigator: Dr Elizabeth Couthard
Planned End Date: 01/04/2026
Local Ref: 3817

European project title European eHealth Care Model for Rare Neurodegenerative Diseases: Development of HD-specific outcome measures UK study title Development and validation of multilingual, multinational HD specific need-based quality of life assessment tools: HD value assessment study.

This study is for anyone who is HD gene positive or companions of an individual who is HD gene positive. The aim is to find out more about their wishes, needs and expectations about living with Huntington’s Disease. From this, a questionnaire will be developed that can assess the quality of life for other individuals impacted by HD, in other countries too. 

PI : Ms Natalie Rosewell

Planned end Date: 01/09/2023

Local Ref: 4950
 

Longitudinal Adaptive Study of Molecular Pathology and Neuronal Networks in Huntington’s Disease Gene Expansion Carriers (HDGECs) and Healthy Controls using Positron Emission Tomography and Multi-modal Magnetic Resonance Imaging

Anyone participating in Enroll-HD study who has been confirmed to have the HD gene expansion are invited to take part in iMarkHD.

The study will compare PET and MRI scan measurements at different stages of the disease, with healthy control participants. This will look for changes which may influence the development of symptoms and disease progression. It may also lead to the identification of disease progression markers that characterise and predict symptom development which may be used in the future as outcome measures
 

PI: Dr Elizabeth Coulthard

Planned end date: 30/09/2024

Local Ref: 5213