At a glance
- What the study gets you
- Health checks and monitoring — no treatment given
- Type of study
- Observational (no treatment given)
- Time in hospital
- In-person visits at study sites — visit count not specified by the sponsor
- Drug or intervention
- Not specified by the sponsor
- How long the study runs
- Study runs about 594 months (dates as stated)
- About the drug or intervention
- Not specified by the sponsor
- Patient visit burden
- Not specified by the sponsor
In plain English
Enroll-HD is an ongoing registry study following people affected by Huntington's disease around the world. It is run by the CHDI Foundation, Inc. It collects information from people who carry the Huntington's disease gene mutation and from people who do not, to help research.
Who can take part
- People who carry the gene change (mutation) that causes Huntington's disease, whether or not they have symptoms
- Carriers who have clear clinical signs of Huntington's disease (called 'manifest' or 'motor-manifest')
- Carriers who do not yet have signs that a doctor regards as diagnostic of Huntington's disease (called 'pre-manifest')
- Blood relatives of carriers who have not had a predictive test, so it is not known whether they carry the gene
- Blood relatives who have had a predictive test showing they do not carry the gene change
- Family members or others not related by blood, such as spouses, partners and caregivers (called 'family controls')
- People with no link to Huntington's disease families, to provide comparison data (called 'community controls')
- People under 18 may take part if they have juvenile-onset Huntington's disease
Who may not be able to
- People who do not meet the inclusion criteria
- People with chorea (jerky movements) who have tested negative for the Huntington's disease gene change
- Community controls with a major central nervous system disorder, such as stroke, Parkinson's disease or multiple sclerosis
What taking part involves
- • Not stated — ask the trial team
- • Participants are classified into groups based on their gene test status and clinical signs; some gene testing is done as part of the study, and neither the researchers nor participants are told the result of that research reclassification
Time commitment: Not stated — ask the trial team about how often visits happen, how long the study lasts, and what taking part involves.
Plain-English summary (AI-generated) from registry data. Not eligibility advice — only the trial team can confirm whether you can take part. Use the eligibility checker to see how your health profile matches this trial.
- Type of study
- Observing health over time
- Ages
- 18 Years and over
- Who
- All
- Number of participants
- 35,000
- Started
- 2012-07
- Last checked
- 2024-02
Plain English Summary
What is this study?
- • Testing a new treatment for huntington's disease
- • Clinical study - 35,000 participants
- • Enroll-HD is a longitudinal, observational, multinational study that integrates two former Huntington's disease (HD) registries-REGISTRY in Europe, and COHORT in North America and Australasia-while also expanding to include sites in Latin America
Who can take part?
- • Ages 18 Years and over
- • Diagnosed with huntington's disease
Where?
- • Exeter - Royal Devon and Exeter NHS Foundation Trust
- • Narborough - Leicestershire Partnership
- • Bristol - North Bristol NHS Trust
- • Kirkcaldy - Fife Health Board
- • +26 more UK sites
This is a simplified summary. Always discuss with your doctor before making any decisions.
About This Trial
Enroll-HD is a longitudinal, observational, multinational study that integrates two former Huntington's disease (HD) registries-REGISTRY in Europe, and COHORT in North America and Australasia-while also expanding to include sites in Latin America. More than 30,000 participants have now enrolled into the study. With annual assessments and no end date, Enroll-HD has built a large and rich database of longitudinal clinical data and biospecimens that form the basis for studies developing tools and biomarkers for progression and prognosis, identifying clinically-relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies. Periodic cuts of the database are now available to any interested researcher to use in their research - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.
More detail
The primary objective of Enroll-HD is to develop a comprehensive repository of prospective and systematically collected clinical research data (demography, clinical features, family history, genetic characteristics) and biological specimens (blood) from individuals with manifest HD, unaffected individuals known to carry the HD mutation or at risk of carrying the HD mutation, and control research participants (e.g., spouses, siblings or offspring of HD mutation carriers known not to carry the HD mutation). Enroll-HD is conceived as a broad-based and long-term project to maximize the efficiencies of non-clinical research and participation in clinical research. With more than 150 active clinical sites in 23 countries, Enroll-HD is now the largest HD database available and is accessible to any interested researcher - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.
How this trial compares with your answers
Answer 2 more questions to improve match
What we know so far
Still need:
- • Tell us your age for better matching
- • Tell us your sex for better matching
Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.
Eligibility at a Glance
Key info
- Age: 18 Years and over
- Who can join: All genders
Biomarkers mentioned
What the study is looking for
- ✓Carriers: This group comprises the primary study population and consists of individuals who carry the HD gene...
- ✓Controls: This group comprises the comparator study population and consists of individuals who do not carry the HD...
- ✓These two major categories can be further subdivided into six different subgroups of eligible individuals:
- ✓Manifest/Motor-manifest HD: Carriers with clinical features that are regarded in the opinion of the investigator as...
- ✓Pre-Manifest/-Motor-manifest HD: Carriers without clinical features regarded as diagnostic of HD.
Who cannot take part
- ✗Individuals who do not meet inclusion criteria,
- ✗Individuals with choreic movement disorders in the context of a negative test for the HD gene mutation.
- ✗For Community Controls: those individuals with a major central nervous system disorder will be excluded (e.g....
- ✗Participants under 18 may be eligible to participate (if they have juvenile-onset HD).
See the full criteria
Where Is This Study? (30 UK sites)
Royal Devon and Exeter NHS Foundation Trust
Exeter EX25DW, United Kingdom
Leicestershire Partnership
Narborough LE19 4SL, United Kingdom
North Bristol NHS Trust
Bristol BS10 5NB, United Kingdom
Fife Health Board
Kirkcaldy KY1 2ND, United Kingdom
Betsi Cadwaladr University Health Board
Wrexham LL13 7TD, United Kingdom
University of Aberdeen
Aberdeen AB25 2ZA, United Kingdom
Birmingham and Solihull Mental Health NHS Foundation Trust
Birmingham B15 2FG, United Kingdom
University of Cambridge
Cambridge CB2 0PY, United Kingdom
Cardiff University
Cardiff CF24 4HQ, United Kingdom
Tayside Health Board
Dundee DD1 9SY, United Kingdom
Lothian Health Board
Edinburgh EH4 2XU, United Kingdom
Greater Glasgow Health Board
Glasgow G51 4TF, United Kingdom
Ayrshire Central Hospital
Kilmarnock KA2 OBB, United Kingdom
NHS Forth Valley
Larbert FK5 4WR, United Kingdom
Leeds Teaching Hospitals
Leeds LS7 4SA, United Kingdom
The Walton Centre
Liverpool L9 7LJ, United Kingdom
Guy's and St. Thomas's NHS Foundation Trust
London SE1 9RT, United Kingdom
St. George's Hospital
London SW17 0RE, United Kingdom
University College of London
London WC1B SEH, United Kingdom
Central Manchester University Hospitals NHS Foundation Trust
Manchester M13 9WL, United Kingdom
Northumberland, Tyne & Wear NHS Foundation Trust of St. Nicholas Hospital
Newcastle upon Tyne NE3 3XT, United Kingdom
St. Andrews Healthcare
Northampton NN1 5DG, United Kingdom
Oxford Radcliffe Hospitals
Oxford OX3 9DU, United Kingdom
Plymouth Hospitals NHS Trust
Plymouth PL6 8BX, United Kingdom
Poole Hospital
Poole BH15 2JB, United Kingdom
Royal Berkshire NHS Foundation Trust
Reading RG1 5AN, United Kingdom
Sheffield Children's NHS Foundation Trust
Sheffield S10 2TH, United Kingdom
University Hospital Southampton
Southampton SO16 6YD, United Kingdom
North Staffordshire Combined Healthcare NHS Trust
Stoke-on-Trent ST4 8HH, United Kingdom
Avon and Wiltshire Mental Health Partnership
Swindon SN3 6BW, United Kingdom
How to Get in Touch
Noopur Modi
Sponsor contactCONTACT
