Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
Launched by CHDI FOUNDATION, INC. · Apr 9, 2012
Trial Information
Current as of August 23, 2025
Recruiting
Keywords
ClinConnect Summary
The Enroll-HD study is a large, ongoing research project focused on Huntington's Disease (HD), a genetic condition that affects movement, thinking, and behavior. This study combines data from previous HD registries in Europe, North America, and Australasia, and now includes participants from Latin America as well. With over 30,000 people enrolled, the goal is to gather detailed information over time to better understand how HD progresses and to develop new tools for measuring the disease. Researchers will have access to this valuable information to help improve treatments and care for those affected by HD.
To participate in the study, individuals must either be carriers of the HD gene mutation or not carry it at all. This means that both people with symptoms of HD and those without (but related to someone with HD) can join. Participants will attend annual visits where their health will be evaluated, and they will provide samples for research. Importantly, this study is open to individuals aged 18 and older, and even those under 18 may be able to participate if they have juvenile-onset HD. Overall, Enroll-HD is an important initiative that aims to advance our understanding of Huntington's Disease through collaboration and long-term data collection.
Gender
ALL
Eligibility criteria
- Inclusion Criteria:
- • Carriers: This group comprises the primary study population and consists of individuals who carry the HD gene expansion mutation.
- • Controls: This group comprises the comparator study population and consists of individuals who do not carry the HD expansion mutation.
- 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 diagnostic of HD.
- • Pre-Manifest/-Motor-manifest HD: Carriers without clinical features regarded as diagnostic of HD.
- • Genotype Unknown: This group includes a first or second degree relative (i.e., related by blood to a carrier) who has not undergone predictive testing for HD and therefore has an undetermined carrier status.
- • Genotype Negative: This group includes a first or second degree relative (i.e., related by blood to a carrier) who has undergone predictive testing for HD and is known not to carry the HD expansion mutation.
- • Family Control: Family members or individuals not related by blood to carriers (e.g., spouses, partners, caregivers).
- • Community Controls: Individuals unrelated to HD carriers who did not grow up in a family affected by HD. Data collected from community controls will be used for generation of normative data for sub-studies.
- • Participant status will be captured in the study database using 2 variables: 1) Investigator Determined Status: this will be based on clinical signs and symptoms and genotyping performed as part of medical care, and will be updated at every visit; and 2) Research Genotyping Status: this will be based on genotyping conducted as part of Enroll-HD study procedures. Based on research genotyping, participants will be reclassified under this variable from Genotype Unknown to 'Carriers' or 'Controls'. Investigators and participants will be blinded to this reclassification.
- Exclusion Criteria:
- • 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. stroke, Parkinson's disease, multiple sclerosis, etc.).
- • Participants under 18 may be eligible to participate (if they have juvenile-onset HD).
About Chdi Foundation, Inc.
CHDI Foundation, Inc. is a unique non-profit organization dedicated to the advancement of research and development for Huntington's disease (HD). Founded in 2002, CHDI collaborates with academic institutions, biotechnology firms, and pharmaceutical companies to accelerate the discovery and development of effective therapies aimed at halting or reversing the progression of HD. Through strategic funding and support, CHDI fosters innovative research and promotes a collaborative environment that enhances the understanding of the disease, ultimately striving to improve the lives of individuals affected by Huntington's disease.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Burlington, Vermont, United States
Ann Arbor, Michigan, United States
Chicago, Illinois, United States
Kansas City, Kansas, United States
Pittsburgh, Pennsylvania, United States
Houston, Texas, United States
Philadelphia, Pennsylvania, United States
Birmingham, Alabama, United States
New York, New York, United States
Baltimore, Maryland, United States
Chicago, Illinois, United States
Charlottesville, Virginia, United States
Boston, Massachusetts, United States
Camden, New Jersey, United States
Westmead, New South Wales, Australia
Chicago, Illinois, United States
Phoenix, Arizona, United States
Minneapolis, Minnesota, United States
Salt Lake City, Utah, United States
Detroit, Michigan, United States
Memphis, Tennessee, United States
Miami, Florida, United States
Indianapolis, Indiana, United States
Omaha, Nebraska, United States
Cleveland, Ohio, United States
Seattle, Washington, United States
Nashville, Tennessee, United States
Salt Lake City, Utah, United States
Portland, Oregon, United States
Washington, District Of Columbia, United States
Farmington, Connecticut, United States
Durham, North Carolina, United States
Saint Louis, Missouri, United States
Boston, Massachusetts, United States
Baltimore, Maryland, United States
Louisville, Kentucky, United States
Albany, New York, United States
Winston Salem, North Carolina, United States
Barcelona, , Spain
Loma Linda, California, United States
Los Angeles, California, United States
Rochester, New York, United States
Ann Arbor, Michigan, United States
Vancouver, British Columbia, Canada
Poole, , United Kingdom
Omaha, Nebraska, United States
Westmead, New South Wales, Australia
Madrid, , Spain
Madrid, , Spain
Barcelona, , Spain
Columbia, South Carolina, United States
Markham, Ontario, Canada
Marseille, , France
Houston, Texas, United States
Montpellier, , France
Ottawa, Ontario, Canada
Wellington, , New Zealand
Groningen, , Netherlands
Sacramento, California, United States
Augusta, Georgia, United States
Rome, , Italy
Auckland, , New Zealand
Freiburg, , Germany
Odense, , Denmark
Clermont Ferrand, , France
Leuven, Vlaams Brabant, Belgium
Erlangen, , Germany
Manchester, , United Kingdom
Southampton, , United Kingdom
Poznan, , Poland
Pamplona, , Spain
Aachen, , Germany
Aarhus, , Denmark
Leiden, , Netherlands
Innsbruck, , Austria
Burgos, , Spain
Warsaw, , Poland
Fargo, North Dakota, United States
Exeter, Devon, United Kingdom
Madison, Wisconsin, United States
Rome, , Italy
Sheffield, , United Kingdom
Barcelona, Cataluña, Spain
Irvine, California, United States
San Diego, California, United States
San Francisco, California, United States
Englewood, Colorado, United States
Gainesville, Florida, United States
Tampa, Florida, United States
Atlanta, Georgia, United States
Rockford, Illinois, United States
Iowa City, Iowa, United States
Wichita, Kansas, United States
Las Vegas, Nevada, United States
New Brunswick, New Jersey, United States
Cincinnati, Ohio, United States
Columbus, Ohio, United States
Henrico, Virginia, United States
Kirkland, Washington, United States
Buenos Aires, , Argentina
Melbourne, Victoria, Australia
Perth, Western Australia, Australia
Parkville, , Australia
Bruxelles, , Belgium
Charleroi, , Belgium
Saint Servais, , Belgium
Calgary, Alberta, Canada
Edmonton, Alberta, Canada
Edmonton, Alberta, Canada
Halifax, Nova Scotia, Canada
Toronto, Ontario, Canada
Montreal, Quebec, Canada
Santiago, , Chile
Medellín, Antioquia, Colombia
Bogotá, Cundinamarca, Colombia
Copenhagen, , Denmark
Strasbourg, Alsace Lorraine, France
Amiens, , France
Angers, , France
Bordeaux, , France
Créteil, , France
Lille Cedex, , France
Paris, , France
Toulouse, , France
Berlin, , Germany
Bochum, , Germany
Dresden, , Germany
Kassel, , Germany
Lübeck, , Germany
Marburg, , Germany
Munich, , Germany
Münster, , Germany
Taufkirchen, , Germany
Ulm, , Germany
Würzburg, , Germany
Dublin 9, Republic Of Ireland, Ireland
Milan, Mi, Italy
Bari, , Italy
Bologna, , Italy
Genoa, , Italy
Milan, , Italy
Napoli, , Italy
Rome, , Italy
Maastricht, , Netherlands
Christchurch, , New Zealand
Gdansk, , Poland
Katowice, , Poland
Kraków, , Poland
Warsaw, , Poland
Amadora, , Portugal
Coimbra, , Portugal
Lisbon, , Portugal
Lisbon, , Portugal
Porto, , Portugal
Badajoz, , Spain
Barakaldo, , Spain
Barcelona,, , Spain
Barcelona, , Spain
Barcelona, , Spain
Palma De Mallorca, , Spain
Valencia, , Spain
Gümligen, , Switzerland
Zürich, , Switzerland
Narborough, Leicestershire, United Kingdom
Bristol, Uk, United Kingdom
Kirkcaldy, Uk, United Kingdom
Wrexham, Uk, United Kingdom
Aberdeen, , United Kingdom
Birmingham, , United Kingdom
Cambridge, , United Kingdom
Cardiff, , United Kingdom
Dundee, , United Kingdom
Edinburgh, , United Kingdom
Glasgow, , United Kingdom
Kilmarnock, , United Kingdom
Larbert, , United Kingdom
Leeds, , United Kingdom
Liverpool, , United Kingdom
London, , United Kingdom
London, , United Kingdom
London, , United Kingdom
Newcastle Upon Tyne, , United Kingdom
Northampton, , United Kingdom
Oxford, , United Kingdom
Plymouth, , United Kingdom
Reading, , United Kingdom
Stoke On Trent, , United Kingdom
Swindon, , United Kingdom
Richmond, Virginia, United States
Patients applied
Trial Officials
Bernhard G Landwehrmeyer, MD, PhD
Principal Investigator
University of Ulm
Jamie Levey
Study Director
CHDI Foundation, Inc.
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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