Last updated on February 2018

Cooperative Huntington's Observational Research Trial

Brief description of study

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.

Detailed Study Description

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.

Clinical Study Identifier: NCT00313495

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Huntington Study Group

University of Alabama at Birmingham
Birmingham, AL United States
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Angeline Gratiano

UCLA School of Medicine
Los Angeles, CA United States
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Nicole Mans

University of California, Davis
Sacramento, CA United States
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jody goldstein

University of California, San Diego
San Diego, CA United States
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Jonathan Gooblar, BA

University of California, San Francisco
San Francisco, CA United States
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Diane Erickson

Colorado Neurological Institute
Littleton, CO United States
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Mary Jane Fitzpatrick

University of Connecticut
Hartford, CT United States
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Candace Cotto

Institutue for Neurodegenerative Disorders
New Haven, CT United States
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Monica Quesada

University of Miami School of Medicine
Miami, FL United States
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Marcia McCall

University of South Florida
Tampa, FL United States
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Elaine Sperin

Emory University
Atlanta, GA United States
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Buff Farrow

Medical College of Georgia
Augusta, GA United States
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Jeana Jaglin

Rush University Medical Center
Chicago, IL United States
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Joan Young

University of Chicago
Chicago, IL United States
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Melissa Wesson

Indiana University School of Medicine
Indianapolis, IN United States
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Michelle Harreld

University of Iowa
Iowa City, IA United States
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Hillary Dubinsky

University of Kansas Medical Center
Kansas City, KS United States
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Greg Suter

Hereditary Neurological Disease Center
Wichita, KS United States
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Annette Robinson

University of Louisville
Louisville, KY United States
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Claire Welsh

Johns Hopkins University
Baltimore, MD United States
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Lauren Doyle

University of Maryland
Baltimore, MD United States
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Melissa Diggin

Boston University School of Medicine
Boston, MA United States
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Robert McInnis

Massachusetts General Hospital
Boston, MA United States
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Huntington Study Group

Hennepin County Medical Center
Minneapolis, MN United States
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Stacey Barton

Washington University School of Medicine
St. Louis, MO United States
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Sharon Evans

Albany Medical College
Albany, NY United States
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Ronda Clouse

Columbia University
New York, NY United States
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Amy Chesire

University of Rochester
Rochester, NY United States
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Sarah Wyne

Duke University Medical Center
Durham, NC United States
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Christine O'Neill

Wake Forest University Baptist Medical Center
Winston Salem, NC United States
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Mary Beth Bialick

University of Cincinnati
Cincinnati, OH United States
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Christine Reece

The Cleveland Clinic
Cleveland, OH United States
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Allison Seward

Ohio State University
Columbus, OH United States
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Iman Affan

University of Pennsylvania
Philadelphia, PA United States
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Nancy Lucarelli

University of Pittsburgh
Pittsburgh, PA United States
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Nathan Jones

University of Tennessee-Memphis
Memphis, TN United States
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Giselle Huet, MS

Southwestern Medical Center
Dallas, TX United States
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Tiffany Reedus

Baylor College of Medicine
Houston, TX United States
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Paola Wall

University of Utah
Salt Lake City, UT United States
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Robert Davis

University of Virginia
Charlottesville, VA United States
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Marsha Merrick

Booth Gardner Parkinsons Center
Kirkland, WA United States
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Jane Griffith

Westmead Hospital
Wentworthville, Australia
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Bernadette Mannaa

The University of Melbourne
Kew, Australia
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Steve Andrew

Graylands, Selby-Lemnos & Special Care Health Services
Perth, Australia
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Mary Lou Klimek

University of Calgary Medical Clinic
Calgary, AB Canada
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Allison Coleman

University of British Columbia
Vancouver, BC Canada
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Sandra Funk

Movement Disorder Clinic Deer Lodge Centre
Winnipeg, MB Canada
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Sandra Funk

Movement Disorders Clinic, Deer Lodge Centre
Winnipeg, MB Canada
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Joanne Courtney-Walker

Halifax Infirmary
Halifax, NS Canada
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Emilija Makaji, MSC

London Health Sciences Centre
London, ON Canada
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Irita Karmalkar

The Centre for Addiction and Mental Health
Markham, ON Canada
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Suzanne Paris

Hotel-Dieu Hospital-CHUM
Montreal, QC Canada
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