Cooperative Huntington's Observational Research Trial
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The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. |
ClinicalTrials.gov Identifier: NCT00313495 |
Recruitment Status
:
Recruiting
First Posted
: April 12, 2006
Last Update Posted
: March 7, 2011
|
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Condition or disease |
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Huntington Disease |
Study Type : | Observational |
Estimated Enrollment : | 5000 participants |
Time Perspective: | Prospective |
Official Title: | Cooperative Huntington's Observational Research Trial |
Study Start Date : | February 2006 |
Estimated Primary Completion Date : | December 2020 |
Estimated Study Completion Date : | December 2020 |


Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | Child, Adult, Senior |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | Yes |
Sampling Method: | Non-Probability Sample |
- An individual of any age that is affected by Huntington's disease
- An individual 18 years of age or older, who has tested positive for the HD gene
- An individual 18 years of age or older who is a parent, sibling or child of an individual affected by HD
- An older adolescent 15 to 17 years of age, who has a parent affected by HD enrolled in COHORT, or a parent who has tested positive for the HD gene enrolled in COHORT (at select sites)
- Grandparents and grandchildren of anyone participating in COHORT who fulfills the requirements of (the above) category (1) or (2)
- HD family members who have no risk for HD due to no family history (spouses or caregivers)
- HD family members who have undergone DNA testing and does not carry the genetic mutation responsible for HD.
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

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00313495
Contact: Huntington Study Group | 800-487-7671 |

United States, Alabama | |
University of Alabama at Birmingham | Terminated |
Birmingham, Alabama, United States | |
United States, California | |
UCLA School of Medicine | Recruiting |
Los Angeles, California, United States | |
Contact: Angeline Gratiano 310-206-2154 agratiano@mednet.ucla.edu | |
University of California, Davis | Recruiting |
Sacramento, California, United States | |
Contact: Nicole Mans 916-734-3541 nicole.mans@ucdmc.ucdavis.edu | |
University of California, San Diego | Recruiting |
San Diego, California, United States | |
Contact: jody goldstein 858-622-5854 jlgoldstein@ucsd.edu | |
University of California, San Francisco | Recruiting |
San Francisco, California, United States, 94143 | |
Contact: Jonathan Gooblar, BA 415-476-1686 jgooblar@memory.ucsf.edu | |
United States, Colorado | |
Colorado Neurological Institute | Recruiting |
Littleton, Colorado, United States | |
Contact: Diane Erickson 303-762-6674 derickson@thecni.org | |
United States, Connecticut | |
University of Connecticut | Recruiting |
Hartford, Connecticut, United States | |
Contact: Mary Jane Fitzpatrick 860-679-4441 fitzpatrick@psychiatry.uchc.edu | |
Institutue for Neurodegenerative Disorders | Recruiting |
New Haven, Connecticut, United States | |
Contact: Candace Cotto 203-401-4339 ccotto@indd.org | |
United States, Florida | |
University of Miami School of Medicine | Recruiting |
Miami, Florida, United States | |
Contact: Monica Quesada 305-243-3647 mquesada2@med.miami.edu | |
University of South Florida | Recruiting |
Tampa, Florida, United States | |
Contact: Marcia McCall 813-974-6022 mamccall@hsc.usf.edu | |
United States, Georgia | |
Emory University | Recruiting |
Atlanta, Georgia, United States | |
Contact: Elaine Sperin 404-728-4786 esperin@emory.edu | |
Medical College of Georgia | Recruiting |
Augusta, Georgia, United States | |
Contact: Buff Farrow 706-721-0619 bfarrow@georgiahealth.edu | |
United States, Illinois | |
Rush University Medical Center | Recruiting |
Chicago, Illinois, United States | |
Contact: Jeana Jaglin 312-942-5003 jjaglin2@rush.edu | |
University of Chicago | Recruiting |
Chicago, Illinois, United States | |
Contact: Joan Young 773-702-4392 jyoung@neurology.bsd.uchicago.edu | |
United States, Indiana | |
Indiana University School of Medicine | Recruiting |
Indianapolis, Indiana, United States | |
Contact: Melissa Wesson 317-274-2390 mkwesson@iupi.edu | |
United States, Iowa | |
University of Iowa | Recruiting |
Iowa City, Iowa, United States | |
Contact: Michelle Harreld 319-384-1174 michelle-harreld@uiowa.edu | |
United States, Kansas | |
University of Kansas Medical Center | Recruiting |
Kansas City, Kansas, United States | |
Contact: Hillary Dubinsky 913-945-5019 hdubinsky@kumc.edu | |
Hereditary Neurological Disease Center | Recruiting |
Wichita, Kansas, United States | |
Contact: Greg Suter 316-721-9250 hndcentre@aol.com | |
United States, Kentucky | |
University of Louisville | Recruiting |
Louisville, Kentucky, United States, 40294 | |
Contact: Annette Robinson 502-540-3585 annette.robinson@louisville.edu | |
United States, Maryland | |
Johns Hopkins University | Recruiting |
Baltimore, Maryland, United States | |
Contact: Claire Welsh 410-955-1349 cswelsh@jhmi.edu | |
University of Maryland | Recruiting |
Baltimore, Maryland, United States | |
Contact: Lauren Doyle 410-328-3339 ldoyle@upi.umaryland.edu | |
United States, Massachusetts | |
Boston University School of Medicine | Recruiting |
Boston, Massachusetts, United States | |
Contact: Melissa Diggin 617-638-7704 melissa.diggin@bmc.org | |
Massachusetts General Hospital | Recruiting |
Boston, Massachusetts, United States | |
Contact: Robert McInnis 617-723-5694 rmcinnis@partners.org | |
United States, Minnesota | |
Hennepin County Medical Center | Active, not recruiting |
Minneapolis, Minnesota, United States | |
United States, Missouri | |
Washington University School of Medicine | Recruiting |
St. Louis, Missouri, United States | |
Contact: Stacey Barton 314-362-3471 bartons@neuro.wustl.edu | |
United States, New York | |
Albany Medical College | Recruiting |
Albany, New York, United States | |
Contact: Sharon Evans 518-262-6611 evanss@mail.amc.edu | |
Columbia University | Recruiting |
New York, New York, United States | |
Contact: Ronda Clouse 212-305-2387 clouser@sergievsky.cpmc.columbia.edu | |
University of Rochester | Recruiting |
Rochester, New York, United States | |
Contact: Amy Chesire 585-341-7519 amy.chesire@ctcc.rochester.edu | |
United States, North Carolina | |
Duke University Medical Center | Recruiting |
Durham, North Carolina, United States | |
Contact: Sarah Wyne 919-668-2837 wyne1991@duke.edu | |
Wake Forest University Baptist Medical Center | Recruiting |
Winston Salem, North Carolina, United States | |
Contact: Christine O'Neill 336-716-8611 coneil@iupui.edu | |
United States, Ohio | |
University of Cincinnati | Recruiting |
Cincinnati, Ohio, United States | |
Contact: Mary Beth Bialick 513-558-0018 howardb33@aol.com | |
The Cleveland Clinic | Recruiting |
Cleveland, Ohio, United States | |
Contact: Christine Reece 216-445-9833 houser@ccf.org | |
Ohio State University | Recruiting |
Columbus, Ohio, United States | |
Contact: Allison Seward 614-688-8672 allison.seward@osumc.edu | |
United States, Pennsylvania | |
University of Pennsylvania | Recruiting |
Philadelphia, Pennsylvania, United States | |
Contact: Iman Affan 215-829-3582 iman.affan@uphs.upenn.edu | |
University of Pittsburgh | Recruiting |
Pittsburgh, Pennsylvania, United States | |
Contact: Nancy Lucarelli 412-692-4659 lucarellina2@upmc.edu | |
United States, Tennessee | |
University of Tennessee-Memphis | Recruiting |
Memphis, Tennessee, United States | |
Contact: Nathan Jones 901-448-6180 njones37@utmem.edu | |
United States, Texas | |
Southwestern Medical Center | Recruiting |
Dallas, Texas, United States, 75390 | |
Contact: Giselle Huet, MS 214-648-0378 giselle.huet@utsouthwestern.edu | |
Contact: Amit Gode, MPH 214-648-0417 amit.gode@utsouthwestern.edu | |
Baylor College of Medicine | Recruiting |
Houston, Texas, United States | |
Contact: Tiffany Reedus 713-798-7438 treedus@bcm.edu | |
United States, Utah | |
University of Utah | Recruiting |
Salt Lake City, Utah, United States, 84108 | |
Contact: Paola Wall 801-581-4543 paola.wall@hsc.utah.edu | |
United States, Virginia | |
University of Virginia | Recruiting |
Charlottesville, Virginia, United States | |
Contact: Robert Davis 434-243-5692 rbd4n@virginia.edu | |
United States, Washington | |
Booth Gardner Parkinsons Center | Recruiting |
Kirkland, Washington, United States, 98034 | |
Contact: Marsha Merrick 425-899-3115 mgmerrick@evergreenhealthcare.org | |
Australia, New South Wales | |
Westmead Hospital | Recruiting |
Wentworthville, New South Wales, Australia | |
Contact: Jane Griffith 011-61-2-98456793 jane_griffith@wsahs.nsw.gov.au | |
Australia, Victoria | |
The University of Melbourne | Recruiting |
Kew, Victoria, Australia | |
Contact: Bernadette Mannaa 61 3 9816 0444 ext 8114 bmannaa@unimelb.edu.au | |
Australia, Western Australia | |
Graylands, Selby-Lemnos & Special Care Health Services | Recruiting |
Perth, Western Australia, Australia, 6910 | |
Contact: Steve Andrew 618 9347 6464 steve.andrews@health.wa.gov.au | |
Canada, Alberta | |
University of Calgary Medical Clinic | Recruiting |
Calgary, Alberta, Canada | |
Contact: Mary Lou Klimek 403-210-8548 klimek@ucalgary.ca | |
Canada, British Columbia | |
University of British Columbia | Recruiting |
Vancouver, British Columbia, Canada | |
Contact: Allison Coleman 604-822-7739 allison@cmmt.ubc.ca | |
Canada, Manitoba | |
Movement Disorder Clinic Deer Lodge Centre | Recruiting |
Winnipeg, Manitoba, Canada | |
Contact: Sandra Funk 204-940-8547 sfunk@mdc-dlc.ca | |
Movement Disorders Clinic, Deer Lodge Centre | Recruiting |
Winnipeg, Manitoba, Canada | |
Contact: Sandra Funk 204-940-8547 sfunk@mdc-dlc.ca | |
Canada, Nova Scotia | |
Halifax Infirmary | Recruiting |
Halifax, Nova Scotia, Canada, B3H1V7 | |
Contact: Joanne Courtney-Walker 902-473-8261 joanne.walker@cdha.nshealth.ca | |
Canada, Ontario | |
London Health Sciences Centre | Recruiting |
London, Ontario, Canada, N6A 5A5 | |
Contact: Emilija Makaji, MSC 519-685-8500 ext 36893 emilija.makaji@lhsc.on.ca | |
The Centre for Addiction and Mental Health | Recruiting |
Markham, Ontario, Canada | |
Contact: Irita Karmalkar 905-472-7082 ext 229 ikarmalkar@movementdisorders.ca | |
Canada, Quebec | |
Hotel-Dieu Hospital-CHUM | Recruiting |
Montreal, Quebec, Canada | |
Contact: Suzanne Paris 514-890-8000 ext 26511 suzanne.paris.chum@ssss.gouv.qc.ca |
Principal Investigator: | Ira Shoulson, MD | University of Rochester/Huntington Study Group |
Additional Information:
Publications automatically indexed to this study by ClinicalTrials.gov Identifier (NCT Number):
Responsible Party: | Ira Shoulson, MD/Principal Investigator, University of Rochester |
ClinicalTrials.gov Identifier: | NCT00313495 History of Changes |
Other Study ID Numbers: |
COHORT |
First Posted: | April 12, 2006 Key Record Dates |
Last Update Posted: | March 7, 2011 |
Last Verified: | March 2011 |
Keywords provided by HP Therapeutics Foundation:
Huntington disease, observational, family members, biomarker |
Additional relevant MeSH terms:
Huntington Disease Basal Ganglia Diseases Brain Diseases Central Nervous System Diseases Nervous System Diseases Movement Disorders Heredodegenerative Disorders, Nervous System Neurodegenerative Diseases |
Genetic Diseases, Inborn Cognition Disorders Neurocognitive Disorders Mental Disorders Dementia Chorea Dyskinesias |