RECRUITING

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

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Huntington's DiseaseHuntington DiseaseJuvenile Huntington's DiseaseRegistryCohortCHDI

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

Enroll-HD is a longitudinal, observational, multinational study that integrates two former Huntington's disease (HD) registries-REGISTRY in Europe, and COHORT in North America and Australasia-while also expanding to include sites in Latin America. More than 30,000 participants have now enrolled into the study. With annual assessments and no end date, Enroll-HD has built a large and rich database of longitudinal clinical data and biospecimens that form the basis for studies developing tools and biomarkers for progression and prognosis, identifying clinically-relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies. Periodic cuts of the database are now available to any interested researcher to use in their research - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.

Official Title

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

Quick Facts

Study Start:2012-07
Study Completion:2062-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT01574053

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Carriers: This group comprises the primary study population and consists of individuals who carry the HD gene expansion mutation.
  2. * Controls: This group comprises the comparator study population and consists of individuals who do not carry the HD expansion mutation.
  3. * Manifest/Motor-manifest HD: Carriers with clinical features that are regarded in the opinion of the investigator as diagnostic of HD.
  4. * Pre-Manifest/-Motor-manifest HD: Carriers without clinical features regarded as diagnostic of HD.
  5. * 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.
  6. * 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.
  7. * Family Control: Family members or individuals not related by blood to carriers (e.g., spouses, partners, caregivers).
  8. * 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.
  1. * Individuals who do not meet inclusion criteria,
  2. * Individuals with choreic movement disorders in the context of a negative test for the HD gene mutation.
  3. * For Community Controls: those individuals with a major central nervous system disorder will be excluded (e.g. stroke, Parkinson's disease, multiple sclerosis, etc.).

Contacts and Locations

Study Contact

Noopur Modi
CONTACT
Info@Enroll-HD.org

Principal Investigator

Bernhard G Landwehrmeyer, MD, PhD
PRINCIPAL_INVESTIGATOR
University of Ulm
Jamie Levey
STUDY_DIRECTOR
CHDI Foundation, Inc.

Study Locations (Sites)

University of Alabama
Birmingham, Alabama, 35294
United States
St. Joseph's Hospital and Medical Center
Phoenix, Arizona, 85013
United States
University of California - Irvine Medical Center
Irvine, California, 92697
United States
Loma Linda Medical Center
Loma Linda, California, 92354
United States
University of California - Los Angeles
Los Angeles, California, 90095
United States
University of California - Davis
Sacramento, California, 95817
United States
University of California - San Diego
San Diego, California, 92037
United States
University of California - San Francisco
San Francisco, California, 94158
United States
Cenexel Rocky Mountain Clinical Research, LLC
Englewood, Colorado, 80113
United States
University of Connecticut
Farmington, Connecticut, 06032
United States
Georgetown University
Washington, District of Columbia, 20007
United States
University of Florida Board of Trustees
Gainesville, Florida, 32607
United States
University of Miami
Miami, Florida, 33431
United States
University of South Florida, HDSA Center of Excellence at USF
Tampa, Florida, 33612
United States
Emory University, Wesley Woods Health Center
Atlanta, Georgia, 30329
United States
Georgia Health Sciences University
Augusta, Georgia, 30912
United States
Northwestern University
Chicago, Illinois, 60611
United States
University of Chicago
Chicago, Illinois, 60637
United States
Rush University Medical Center
Chicago, Illinois, 68612
United States
University of Illinois College of Medicine at Rockford
Rockford, Illinois, 61107
United States
Indiana University
Indianapolis, Indiana, 46202
United States
University of Iowa
Iowa City, Iowa, 52245
United States
University of Kansas Medical Center
Kansas City, Kansas, 66160
United States
Hereditary Neurological Disease Center
Wichita, Kansas, 67226
United States
University of Louisville
Louisville, Kentucky, 40202
United States
University of Maryland School of Medicine
Baltimore, Maryland, 21201
United States
Johns Hopkins University
Baltimore, Maryland, 21287
United States
Boston University Medical Center
Boston, Massachusetts, 02118
United States
Beth Israel Deaconess Medical Center
Boston, Massachusetts, 02215
United States
University of Michigan
Ann Arbor, Michigan, 48105
United States
Wayne State University
Detroit, Michigan, 48201
United States
Hennepin County Medical Center
Minneapolis, Minnesota, 55415
United States
Washington University in St. Louis
Saint Louis, Missouri, 63110
United States
University of Nebraska Medical Center
Omaha, Nebraska, 68106
United States
Cleveland Clinic - Las Vegas
Las Vegas, Nevada, 89102
United States
Cooper University Hospital
Camden, New Jersey, 08103
United States
Rutgers, the State University of New Jersey
New Brunswick, New Jersey, 08901
United States
Albany Medical College
Albany, New York, 12208
United States
Columbia University
New York, New York, 10032
United States
University of Rochester
Rochester, New York, 14618
United States
Duke University
Durham, North Carolina, 27705
United States
Wake Forest School of Medicine
Winston-Salem, North Carolina, 27157
United States
Sanford Health
Fargo, North Dakota, 58122
United States
University of Cincinatti
Cincinnati, Ohio, 42519
United States
Cleveland Clinic
Cleveland, Ohio, 44195
United States
The Ohio State University
Columbus, Ohio, 43021
United States
Oregon Health and Science University
Portland, Oregon, 97239
United States
University of Pennsylvania
Philadelphia, Pennsylvania, 19107
United States
University of Pittsburgh
Pittsburgh, Pennsylvania, 15213
United States
University of South Carolina
Columbia, South Carolina, 29203
United States
University of Tennessee Health Science Center
Memphis, Tennessee, 38163
United States
Vanderbilt University Medical Center
Nashville, Tennessee, 37232
United States
Baylor College of Medicine
Houston, Texas, 77030
United States
University of Texas Health Science Center
Houston, Texas, 77030
United States
University of Utah
Salt Lake City, Utah, 84108
United States
University of Vermont
Burlington, Vermont, 05401
United States
University of Virginia
Charlottesville, Virginia, 22908
United States
Virginia Commonwealth University Parkinson's and Movement Disorders Center
Henrico, Virginia, 23298
United States
Virginia Commonwealth University
Richmond, Virginia, 23233
United States
Booth Gardner Parkinson's Care Center (Evergreen Health)
Kirkland, Washington, 98034
United States
University of Washington Medical Center
Seattle, Washington, 98195
United States
University of Wisconsin - Madison
Madison, Wisconsin, 53705
United States

Collaborators and Investigators

Sponsor: CHDI Foundation, Inc.

  • Bernhard G Landwehrmeyer, MD, PhD, PRINCIPAL_INVESTIGATOR, University of Ulm
  • Jamie Levey, STUDY_DIRECTOR, CHDI Foundation, Inc.

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2012-07
Study Completion Date2062-01

Study Record Updates

Study Start Date2012-07
Study Completion Date2062-01

Terms related to this study

Keywords Provided by Researchers

  • Huntington's Disease
  • Huntington Disease
  • Juvenile Huntington's Disease
  • Registry
  • Cohort
  • CHDI

Additional Relevant MeSH Terms

  • Huntington's Disease