Friday 15 September 2023
A special event took place at the National Institute for Health and Care Research (NIHR) Manchester Clinical Research Facility (CRF) at Manchester Royal Infirmary (MRI) to celebrate 10 years of MFT’s involvement in ‘Enroll-HD’ – a global registry study for Huntington’s disease (HD).
Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease – an inherited neurodegenerative condition that stops parts of the brain working properly over time. The platform is also a resource for families, clinicians, researchers, advocates, and anyone else who has a connection to or an interest in Huntington’s disease.
Staff from Manchester CRF at MRI and the Manchester Centre for Genomic Medicine, based at Saint Mary’s Hospital, attended the event alongside Ruth Fullam, European Director of Enroll-HD and Tim McLean, Enroll-HD Platform Co-Leader at the CHDI Foundation, which sponsors the study.
Participants are recruited to the study though the Manchester Centre for Genomic Medicine and clinical appointments and cognitive assessments are carried out at the Manchester CRF at MRI with new and existing participants.
MFT currently has 295 active participants and is still actively recruiting. MFT is one of the largest of the 155 study sites worldwide, recruiting across 23 countries.
The celebration consisted of a short presentation outlining the history of Enroll-HD, including worldwide recruitment and how the trial has progressed in the last 10 years, marking MFT’s contribution to the worldwide advances in this area through its hosting of the study since 2014.
As well as being a clinical observational study (which is designed to study how the clinical features of HD evolve over time and is not testing any drugs), Enroll-HD is also a clinical research platform and helps support and facilitate clinical trials. Over 90 per cent of study sites that have carried out drug trials in HD are also Enroll-HD sites.
The ability to search the Enroll-HD database for participants who match the inclusion criteria for new clinical trials has greatly sped up recruitment and will therefore help to advance the development of disease-modifying treatments for this currently incurable condition.
Over the last decade, the Manchester CRF at MRI has hosted 13 industry-sponsored clinical trials in HD which would not have been possible without the foundation provided by the Enroll-HD study. This includes the recent Roche GENERATION-HD1 trial which was the first to use a genetic-based therapy to attempt to slow the disease process.
Dr David Craufurd, Consultant at the Manchester Centre for Genomic Medicine and Principal Investigator for Enroll-HD at MFT said;
“It was a pleasure to attend and celebrate our contributions to Enroll-HD over the last 10 years alongside our study team and clinical research colleagues at Manchester CRF at MRI.
“There is, at present, no cure for Huntington’s disease, but great strides have been made in this direction over the ten years since Enroll-HD began, with MFT participating in many ground-breaking trials over the last decade.
“Well done to all colleagues involved in the Enroll-HD study, 10 years of recruitment is an impressive milestone, and I am proud to lead this study at MFT.”