Cooperative Huntington's Observational Research Trial



Status:Recruiting
Conditions:Neurology
Therapuetic Areas:Neurology
Healthy:No
Age Range:Any
Updated:4/2/2016
Start Date:February 2006
End Date:December 2020
Contact:Huntington Study Group
Phone:800-487-7671

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The purpose of this study is to collect prospective data from individuals who are part of a
Huntington Disease (HD) family, in order to relate phenotypes between individuals and
families with each other and genetic factors in order to learn more about HD, develop
potential treatments for HD, and to plan for future research studies of experimental drugs
aimed at slowing or postponing the onset and progression of HD.

COHORT (Cooperative Huntington Observational Research Trial) is a coordinated research
effort by Huntington Study Group research centers worldwide to prospectively collect data
from consenting individuals who are affected by Huntington's disease (HD) and who are part
of an HD family. The systematically accrued data from annual prospective assessments will
relate clinical characteristics (phenotypes) between families with genetic and environmental
factors. The knowledge from these relationships will better inform us about the onset and
progression of HD, help identify potential interventions for HD, and aid in planning
research studies of experimental treatments aimed at slowing or postponing the onset of HD.
The consented collection of biological samples will further provide research material and
correlative data for scientists to identify biomarkers that parallel the development and
progression of HD. Identification of biomarkers will in turn contribute to our understanding
of HD and enhance the efficiency and power of disease-modifying therapeutic trials.

Inclusion Criteria:

- (1) MANIFEST/PRE-MANIFEST HD: Individuals of any age who are affected by HD OR an
individual 18 years or older who - has tested positive for the HD gene.

- (2) INDIVIDUALS AT RISK: An individual 18 years or older who has not undergone DNA
testing for the mutation responsible for HD and who is a first degree relative
(parent, sibling, child) of an individual with Manifest or pre-manifest HD OR an
older adolescent 15 to 17 years of age who has a parent with manifest HD or
pre-manifest HD enrolled in COHORT.

- (3) ADULTS AT SECONDARY RISK: An individual 18 years of age or older who has not
undergone DNA testing for the mutation responsible for HD and is a grandparent or
grandchild of an individual enrolled in COHORT who has manifest HD or pre-manifest HD

- (4) CONTROL: A spouse or caregiver, 18 years of age or older, of an individual
enrolled in COHORT who has manifest HD or pre-manifest HD

- (5) ADULT GENE NEGATIVE: An individual, 18 years of age or older, with a family
history of HD who has undergone DNA testing and does not carry the genetic mutation
responsible for HD.

Exclusion Criteria:

- (1) Anyone who does not fit the inclusion criteria
We found this trial at
41
sites
3901 Rainbow Blvd
Kansas City, Kansas 66160
(913) 588-5000
University of Kansas Medical Center The University of Kansas Medical Center serves Kansas through excellence...
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201 Dowman Dr
Atlanta, Georgia 30303
(404) 727-6123
Emory University Emory University, recognized internationally for its outstanding liberal artscolleges, graduate and professional schools,...
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Atlanta, GA
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3400 N Charles St
Baltimore, Maryland 21205
410-516-8000
Johns Hopkins University The Johns Hopkins University opened in 1876, with the inauguration of its...
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Baltimore, MD
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1720 2nd Ave S
Birmingham, Alabama 35233
(205) 934-4011 
University of Alabama at Birmingham The University of Alabama at Birmingham (UAB) traces its roots...
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Birmingham, AL
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185 Cambridge Street
Boston, Massachusetts 02114
617-724-5200
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Boston, MA
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72 East Concord Street
Boston, Massachusetts 02118
(617) 638-5300
Boston University School of Medicine A leader in medical education and research, Boston University School...
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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
Cleveland Clinic Cleveland Clinic is committed to principles as presented in the United Nations Global...
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Cleveland, OH
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1200 Moursund Street
Houston, Texas 77030
(713) 798-4951
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
University of Iowa With just over 30,000 students, the University of Iowa is one of...
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116th St and Broadway
New York, New York 10027
(212) 854-1754
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
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
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
University of Utah Research is a major component in the life of the U benefiting...
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4202 E Fowler Ave
Tampa, Florida 33620
(813) 974-2011
University of South Florida The University of South Florida is a high-impact, global research university...
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47 New Scotland Ave
Albany, New York 12208
(518) 262-3125
Albany Medical College Albany Medical Center is northeastern New York's only academic health sciences center...
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1120 15th Street
Augusta, Georgia 30912
(706) 721-0211
Med College of Georgia Georgia Regents University, home of the Medical College of Georgia, is...
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Baltimore, Maryland 20742
(301) 405-1000
University of Maryland As a globally-connected university offering a world-class education, the University of Maryland...
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Charlottesville, Virginia 22903
(434) 924-0311
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
Rush University Medical Center Rush University Medical Center encompasses a 664-bed hospital serving adults and...
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2600 Clifton Ave
Cincinnati, Ohio 45267
(513) 556-6000
University of Cincinnati The University of Cincinnati offers students a balance of educational excellence and...
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281 W. Lane Ave
Columbus, Ohio 43210
(614) 292-6446
Ohio State University The Ohio State University’s main Columbus campus is one of America’s largest...
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Dallas, Texas 75390
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2301 Erwin Rd
Durham, North Carolina 27710
919-684-8111
Duke Univ Med Ctr As a world-class academic and health care system, Duke Medicine strives...
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Hartford, Connecticut
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340 W 10th St #6200
Indianapolis, Indiana 46202
(317) 274-3772
Indiana University School of Medicine With more than 2,000 students in 2013, the Indiana University...
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Kirkland, Washington 98034
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Littleton, Colorado
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Los Angeles, California
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500 S Preston St
Louisville, Kentucky
(502) 852-5555
University of Louisville The University of Louisville is a state supported research university located in...
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Memphis, Tennessee 38163
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Minneapolis, Minnesota 55414
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3451 Walnut St
Philadelphia, Pennsylvania 19104
1 (215) 898-5000
Univ of Pennsylvania Penn has a long and proud tradition of intellectual rigor and pursuit...
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1 Shields Ave
Sacramento, California 95616
(530) 752-1011
University of California-Davis As we begin our second century, UC Davis is poised to become...
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San Diego, California 92093
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San Francisco, California 94143
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St. Louis, Missouri 63108
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Winston Salem, North Carolina 27103
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