EnrollHD: A Prospective Registry Study in a Global Huntington's Disease Cohort

Research summary

Enroll-HD is a multi-centre, multi-national, prospective observational study of Huntington’s disease (HD) in a global population. It is an open-ended study which will include as many eligible participants as are willing, who will be asked to participate in as many annual study visits as possible. The goal of Enroll-HD is to build a large and rich database of clinical information and biospecimens. These 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. The Enroll-HD study aims to improve the understanding of the dynamic phenotypic spectrum of HD and the underlying disease mechanisms by -collecting natural history data covering cognitive, behavioural and motor domains which will allow estimates of rates of progression in HD and insights into the neurobiology of HD -collecting data and biospecimens to identify genetic and environmental factors influencing and/or modifying HD characteristics and disease progression -promoting studies that may provide clues to the underlying disease mechanisms of HD. Enroll-HD aims to promote the development of evidence-based guidelines to inform clinical decision making and improve health outcomes for the participant/family unit by: -assisting in the identification of beneficial interventions -facilitating the dissemination and implementation of currently proposed best clinical practices -providing a platform for the conduct of outcome research -promoting exploratory data analysis projects that may identify processes to further improve the health care of affected individuals and their families. The Enroll-HD study aims to provide a platform to support the design and conduct of clinical trials by: -collecting longitudinal data to inform disease modelling studies -facilitating the identification of potential trial participants.

Principal Investigator

Dr Richard Armstrong

Contact us

Email: dendron@ouh.nhs.uk

IRAS number

129743