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| Name | Class |
|---|---|
| Huntington Study Group | NETWORK |
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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.
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Huntington Study Group | Contact | 800-487-7671 |
| Name | Affiliation | Role |
|---|---|---|
| Ira Shoulson, MD | University of Rochester/Huntington Study Group | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Alabama at Birmingham | Terminated | Birmingham | Alabama | United States | ||
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 31611263 | Derived | Connors MH, Teixeira-Pinto A, Loy CT. Psychosis and longitudinal outcomes in Huntington disease: the COHORT Study. J Neurol Neurosurg Psychiatry. 2020 Jan;91(1):15-20. doi: 10.1136/jnnp-2019-320646. Epub 2019 Oct 13. | |
| 24126537 | Derived | Dorsey ER, Beck CA, Darwin K, Nichols P, Brocht AF, Biglan KM, Shoulson I; Huntington Study Group COHORT Investigators. Natural history of Huntington disease. JAMA Neurol. 2013 Dec;70(12):1520-30. doi: 10.1001/jamaneurol.2013.4408. |
| Label | URL |
|---|---|
| The Huntington Study Group (HSG) is a non-profit group of physicians and other health care providers from medical centers in the U.S., Canada, Europe and Australia, experienced in the care of Huntington patients and dedicated to clinical research of HD. | View source |
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Blood, DNA and Urine
| UCLA School of Medicine |
| Recruiting |
| Los Angeles |
| California |
| United States |
|
| University of California, Davis | Recruiting | Sacramento | California | United States |
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| University of California, San Diego | Recruiting | San Diego | California | United States |
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| University of California, San Francisco | Recruiting | San Francisco | California | 94143 | United States |
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| Colorado Neurological Institute | Recruiting | Littleton | Colorado | United States |
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| University of Connecticut | Recruiting | Hartford | Connecticut | United States |
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| Institutue for Neurodegenerative Disorders | Recruiting | New Haven | Connecticut | United States |
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| University of Miami School of Medicine | Recruiting | Miami | Florida | United States |
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| University of South Florida | Recruiting | Tampa | Florida | United States |
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| Emory University | Recruiting | Atlanta | Georgia | United States |
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| Medical College of Georgia | Recruiting | Augusta | Georgia | United States |
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| Rush University Medical Center | Recruiting | Chicago | Illinois | United States |
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| University of Chicago | Recruiting | Chicago | Illinois | United States |
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| Indiana University School of Medicine | Recruiting | Indianapolis | Indiana | United States |
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| University of Iowa | Recruiting | Iowa City | Iowa | United States |
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| University of Kansas Medical Center | Recruiting | Kansas City | Kansas | United States |
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| Hereditary Neurological Disease Center | Recruiting | Wichita | Kansas | United States |
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| University of Louisville | Recruiting | Louisville | Kentucky | 40294 | United States |
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| Johns Hopkins University | Recruiting | Baltimore | Maryland | United States |
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| University of Maryland | Recruiting | Baltimore | Maryland | United States |
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| Boston University School of Medicine | Recruiting | Boston | Massachusetts | United States |
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| Massachusetts General Hospital | Recruiting | Boston | Massachusetts | United States |
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| Hennepin County Medical Center | Active, not recruiting | Minneapolis | Minnesota | United States |
| Washington University School of Medicine | Recruiting | St Louis | Missouri | United States |
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| Albany Medical College | Recruiting | Albany | New York | United States |
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| Columbia University | Recruiting | New York | New York | United States |
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| University of Rochester | Recruiting | Rochester | New York | United States |
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| Duke University Medical Center | Recruiting | Durham | North Carolina | United States |
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| Wake Forest University Baptist Medical Center | Recruiting | Winston-Salem | North Carolina | United States |
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| University of Cincinnati | Recruiting | Cincinnati | Ohio | United States |
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| The Cleveland Clinic | Recruiting | Cleveland | Ohio | United States |
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| Ohio State University | Recruiting | Columbus | Ohio | United States |
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| University of Pennsylvania | Recruiting | Philadelphia | Pennsylvania | United States |
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| University of Pittsburgh | Recruiting | Pittsburgh | Pennsylvania | United States |
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| University of Tennessee-Memphis | Recruiting | Memphis | Tennessee | United States |
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| Southwestern Medical Center | Recruiting | Dallas | Texas | 75390 | United States |
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| Baylor College of Medicine | Recruiting | Houston | Texas | United States |
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| University of Utah | Recruiting | Salt Lake City | Utah | 84108 | United States |
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| University of Virginia | Recruiting | Charlottesville | Virginia | United States |
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| Booth Gardner Parkinsons Center | Recruiting | Kirkland | Washington | 98034 | United States |
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| Westmead Hospital | Recruiting | Wentworthville | New South Wales | Australia |
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| The University of Melbourne | Recruiting | Kew | Victoria | Australia |
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| Graylands, Selby-Lemnos & Special Care Health Services | Recruiting | Perth | Western Australia | 6910 | Australia |
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| University of Calgary Medical Clinic | Recruiting | Calgary | Alberta | Canada |
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| University of British Columbia | Recruiting | Vancouver | British Columbia | Canada |
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| Movement Disorder Clinic Deer Lodge Centre | Recruiting | Winnipeg | Manitoba | Canada |
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| Movement Disorders Clinic, Deer Lodge Centre | Recruiting | Winnipeg | Manitoba | Canada |
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| Halifax Infirmary | Recruiting | Halifax | Nova Scotia | B3H1V7 | Canada |
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| London Health Sciences Centre | Recruiting | London | Ontario | N6A 5A5 | Canada |
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| The Centre for Addiction and Mental Health | Recruiting | Markham | Ontario | Canada |
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| Hotel-Dieu Hospital-CHUM | Recruiting | Montreal | Quebec | Canada |
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| 22359536 | Derived | Huntington Study Group COHORT Investigators; Dorsey E. Characterization of a large group of individuals with huntington disease and their relatives enrolled in the COHORT study. PLoS One. 2012;7(2):e29522. doi: 10.1371/journal.pone.0029522. Epub 2012 Feb 16. |
| ID | Term |
|---|---|
| D006816 | Huntington Disease |
| ID | Term |
|---|---|
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
| D003704 | Dementia |
| D002819 | Chorea |
| D020820 | Dyskinesias |
| D009069 | Movement Disorders |
| D020271 | Heredodegenerative Disorders, Nervous System |
| D019636 | Neurodegenerative Diseases |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D003072 | Cognition Disorders |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
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