Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort



Status:Recruiting
Conditions:Neurology
Therapuetic Areas:Neurology
Healthy:No
Age Range:18 - Any
Updated:11/8/2018
Start Date:July 2012
End Date:January 2062
Contact:Qura Ain
Email:Info@Enroll-HD.org
Phone:(609) 945-9054

Use our guide to learn which trials are right for you!

Enroll-HD is a longitudinal, observational, multinational study that will integrate two
existing Huntington's Disease (HD) registries, REGISTRY in Europe and COHORT in North America
and Australia, while also expanding to include sites in Latin America and Asia. With no end
date and annual assessments, the goal of Enroll-HD is to build a large and rich database of
longitudinal clinical information and biospecimens. This database 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 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 over 200 sites in roughly 30 countries, Enroll HD
will be the largest database available for HD researchers.

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 disease, Multiple Sclerosis, etc.).

Participants under 18 may be eligible to participate (if they have juvenile-onset HD).
We found this trial at
54
sites
Las Vegas, Nevada 89102
Principal Investigator: Zoltan Mari
Phone: 702-462-6804
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3400 N Charles St
Baltimore, Maryland 21205
410-516-8000
Principal Investigator: Frederick Nucifora
Phone: 410-955-1349
Johns Hopkins University The Johns Hopkins University opened in 1876, with the inauguration of its...
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85 S Prospect St
Burlington, Vermont 5405
(802) 656-3131
Principal Investigator: James Boyd
Phone: 802-847-6039
University of Vermont The University of Vermont combines faculty-student relationships most commonly found in a...
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5801 South Ellis Avenue
Chicago, Illinois 60637
 773.702.1234
University of Chicago One of the world's premier academic and research institutions, the University of...
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9500 Euclid Avenue
Cleveland, Ohio 44106
216.444.2200
Phone: 216-445-5637
Cleveland Clinic Cleveland Clinic is committed to principles as presented in the United Nations Global...
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5050 Anthony Wayne Dr
Detroit, Michigan 48201
(313) 577-2424
Wayne State University Founded in 1868, Wayne State University is a nationally recognized metropolitan research...
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Detroit, MI
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Durham, North Carolina 27710
(919) 684-8111
Principal Investigator: Burton Scott
Phone: 919-684-0865
Duke University Younger than most other prestigious U.S. research universities, Duke University consistently ranks among...
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1200 Moursund Street
Houston, Texas 77030
(713) 798-4951
Principal Investigator: Joseph Jankovic
Phone: 713-798-3951
Baylor College of Medicine Baylor College of Medicine in Houston, the only private medical school...
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101 Jessup Hall
Iowa City, Iowa 52242
(319) 335-3500
Principal Investigator: Jane Paulsen
Phone: 319-335-6640
University of Iowa With just over 30,000 students, the University of Iowa is one of...
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Los Angeles, California 90095
310-825-4321
Principal Investigator: Susan Perlman
Phone: 909-558-2037
University of California at Los Angeles The University of California, Los Angeles (UCLA) is an...
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116th St and Broadway
New York, New York 10027
(212) 854-1754
Principal Investigator: Karen Marder
Phone: 212-305-4597
Columbia University In 1897, the university moved from Forty-ninth Street and Madison Avenue, where it...
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4200 Fifth Ave
Pittsburgh, Pennsylvania 15260
(412) 624-4141
Principal Investigator: Valerie Suski
Phone: 412-692-2394
University of Pittsburgh The University of Pittsburgh is a state-related research university, founded as the...
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60 Crittenden Blvd # 70
Rochester, New York 14642
(585) 275-2121
Principal Investigator: Frederick Marshall
Phone: 585-341-7519
University of Rochester The University of Rochester is one of the country's top-tier research universities....
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201 Presidents Circle
Salt Lake City, Utah 84108
801) 581-7200
Principal Investigator: Paolo Moretti
Phone: 801-581-4543
University of Utah Research is a major component in the life of the U benefiting...
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47 New Scotland Ave
Albany, New York 12208
(518) 262-3125
Principal Investigator: Era Hanspal, MD
Phone: 518-262-5938
Albany Medical College Albany Medical Center is northeastern New York's only academic health sciences center...
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500 S State St
Ann Arbor, Michigan 48109
(734) 764-1817
Principal Investigator: Noelle Carlozzi
Phone: 734-763-3982
University of Michigan The University of Michigan was founded in 1817 as one of the...
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Atlanta, Georgia 30329
Principal Investigator: Stewart Factor
Phone: 404-728-4786
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1459 Laney-Walker Blvd
Augusta, Georgia 30901
(706) 721-3052
Principal Investigator: John Morgan
Phone: 706-721-4152
Georgia Health Sciences University Georgia Regents University, home of the Medical College of Georgia, is...
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655 West Baltimore Street
Baltimore, Maryland 21201
(410) 706-7410
University of Maryland School of Medicine Established in 1807, The School of Medicine is the...
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Birmingham, Alabama 35294
Principal Investigator: Victor Sung, MD
Phone: 205-996-2807
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1 Boston Medical Center Place
Boston, Massachusetts 02118
617.638.8000
Principal Investigator: Marie-Saint Hillaire
Phone: 617-638-7745
Boston University Medical Center Boston Medical Center is an extraordinary community of health care providers...
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Buenos Aires,
Principal Investigator: Emilia Gatto
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1 Cooper Plaza
Camden, New Jersey 08103
(856) 342-2000
Principal Investigator: Amy Colcher
Phone: 856-342-2460
Cooper University Hospital Cooper University Health Care, the clinical campus of Cooper Medical School of...
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Charlottesville, Virginia 22903
(434) 924-0311
Principal Investigator: Madaline Harrison
Phone: 434-297-5711
University of Virginia The University of Virginia is distinctive among institutions of higher education. Founded...
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1653 W. Congress Parkway
Chicago, Illinois 60612
(312) 942-5000
Principal Investigator: Jennifer Goldman
Phone: 312-942-8002
Rush University Medical Center Rush University Medical Center encompasses a 664-bed hospital serving adults and...
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2600 Clifton Avenue
Cincinnati, Ohio 45220
Principal Investigator: Andrew Duker
Phone: 513-558-0169
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281 W. Lane Ave
Columbus, Ohio 43210
(614) 292-6446
Principal Investigator: Sandra Kostyk
Phone: 614-688-8672
Ohio State University The Ohio State University’s main Columbus campus is one of America’s largest...
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Englewood, Colorado 80113
Principal Investigator: Rajeev Kumar, MD
Phone: 303-762-6674
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Fargo, North Dakota 58122
Principal Investigator: Tanya Harlow
Phone: 701-234-4091
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Farmington, Connecticut 06030
Principal Investigator: Kevin Manning
Phone: 860-679-4418
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Gainesville, Florida 32611
Principal Investigator: Nikolaus McFarland, MD, PHD
Phone: 352-294-5030
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Henrico, Virginia 23298
Principal Investigator: Claudia Testa
Phone: 804-662-5307
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Houston, Texas 77030
Principal Investigator: Erin Furr-Stimming
Phone: 832-325-7107
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Irvine, California 92697
Principal Investigator: Neal Hermanowicz
Phone: 949-824-7524
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3901 Rainbow Blvd
Kansas City, Kansas 66160
(913) 588-5000
Principal Investigator: Richard Dubinksy, MD
Phone: 913-588-6983
University of Kansas Medical Center The University of Kansas Medical Center serves Kansas through excellence...
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Kirkland, Washington 98034
Principal Investigator: Pinky Agarwal
Phone: 425-899-5370
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Loma Linda, California 92354
Principal Investigator: Khashayer Dashtipour
Phone: 909-558-2037
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500 S Preston St
Louisville, Kentucky
(502) 852-5555
Principal Investigator: Kathrin Lafaver
Phone: 502-540-3585
University of Louisville The University of Louisville is a state supported research university located in...
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Memphis, Tennessee 38163
Principal Investigator: Mark LeDoux, MD, PhD
Phone: 901-448-7375
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Minneapolis, Minnesota 55404
Principal Investigator: Martha Nance
Phone: 612-873-2943
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2201 West End Ave
Nashville, Tennessee 37232
(615) 322-7311
Principal Investigator: Daniel Claassen
Phone: 615-875-1182
Vanderbilt University Vanderbilt offers undergraduate programs in the liberal arts and sciences, engineering, music, education...
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126 College Avenue
New Brunswick, New Jersey 08901
Principal Investigator: Daniel Schneider
Phone: 732-235-8132
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3451 Walnut St
Philadelphia, Pennsylvania 19104
1 (215) 898-5000
Principal Investigator: Pedro Gonzalez-Alegre, MD
Phone: 215-829-5176
Univ of Pennsylvania Penn has a long and proud tradition of intellectual rigor and pursuit...
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350 W Thomas Rd
Phoenix, Arizona 85013
(602) 406-3000
Principal Investigator: Srivadee Oravivattanakul
Phone: 602-406-4206
St. Joseph's Hospital and Medical Center St. Joseph's is a nationally recognized center for quality...
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1 Shields Ave
Sacramento, California 95616
(530) 752-1011
Phone: 916-734-3541
University of California-Davis As we begin our second century, UC Davis is poised to become...
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Saint Louis, Missouri 63110
Principal Investigator: Joel Perlmutter
Phone: 314-362-3471
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San Diego, California 92093
Principal Investigator: Jody Corey-Bloom
Phone: 858-246-1254
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San Francisco, California 94143
Principal Investigator: Michael Geschwind
Phone: 415-476-8791
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1959 NE Pacific St
Seattle, Washington 98195
(206) 598-3300
Principal Investigator: Ali Samii
Phone: 206-543-3647
University of Washington Medical Center University of Washington Medical Center is one of the nation's...
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Tampa, Florida 33612
Principal Investigator: Juan Sanchez-Ramos, MD
Phone: 813-974-6022
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3700 O St NW
Washington, District of Columbia 20057
(202) 687-0100
Principal Investigator: Karen Anderson
Phone: 202-444-0809
Georgetown University Georgetown University is one of the world's leading academic and research institutions, offering...
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Wichita, Kansas
Principal Investigator: William Mallonee, MD
Phone: 316-609-3020
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Winston-Salem, North Carolina 27157
Principal Investigator: Frances Walker
Phone: 336-716-8611
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