Follows people with Huntington's disease over time through yearly checkups
Observes adults with Huntington's disease through yearly checkups, collecting health information and samples.
Plain-language title generated from the registry record
Registry title: Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
Key facts
- Where
- Albany, Ann Arbor, Atlanta, Augusta, Baltimore, Birmingham, Boston, Burlington, Camden, Charlottesville, Chicago, Cincinnati, Cleveland, Columbia, Columbus, Detroit, Durham, Englewood, Fargo, Farmington, Gainesville, Henrico, Houston, Indianapolis, Iowa City, Irvine, Kansas City, Kirkland, Las Vegas, Loma Linda, Los Angeles, Louisville, Madison, Memphis, Miami, Minneapolis, Nashville, New Brunswick, New York, Omaha, Philadelphia, Phoenix, Pittsburgh, Portland, Richmond, Rochester, Rockford, Sacramento, Salt Lake City, San Diego, San Francisco, Seattle, St Louis, Tampa, Washington D.C., Wichita, and Winston-Salem, United StatesSee the 62 sites
Where in United States
- Albany Medical CollegeAlbany, United StatesTaking people
- University of MichiganAnn Arbor, United StatesTaking people
- Emory University, Wesley Woods Health CenterAtlanta, United StatesTaking people
- Georgia Health Sciences UniversityAugusta, United StatesNo longer taking part
- Johns Hopkins UniversityBaltimore, United StatesTaking people
- University of Maryland School of MedicineBaltimore, United StatesNo longer taking part
- University of AlabamaBirmingham, United StatesTaking people
- Beth Israel Deaconess Medical CenterBoston, United StatesTaking people
- Boston University Medical CenterBoston, United StatesNo longer taking part
- University of VermontBurlington, United StatesTaking people
- Cooper University HospitalCamden, United StatesNo longer taking part
- University of VirginiaCharlottesville, United StatesTaking people
- Northwestern UniversityChicago, United StatesTaking people
- Rush University Medical CenterChicago, United StatesTaking people
- University of ChicagoChicago, United StatesNo longer taking part
- University of CincinattiCincinnati, United StatesTaking people
- Cleveland ClinicCleveland, United StatesTaking people
- University of South CarolinaColumbia, United StatesTaking people
- The Ohio State UniversityColumbus, United StatesTaking people
- Wayne State UniversityDetroit, United StatesNo longer taking part
- Duke UniversityDurham, United StatesTaking people
- CenExel Rocky Mountain Clinical Research, LLCEnglewood, United StatesTaking people
- Sanford HealthFargo, United StatesTaking people
- University of ConnecticutFarmington, United StatesTaking people
- University of Florida Board of TrusteesGainesville, United StatesTaking people
- Virginia Commonwealth University Parkinson's and Movement Disorders CenterHenrico, United StatesTaking people
- Baylor College of MedicineHouston, United StatesTaking people
- University of Texas Health Science CenterHouston, United StatesTaking people
- Indiana UniversityIndianapolis, United StatesTaking people
- University of IowaIowa City, United StatesTaking people
- University of California, Irvine Medical CenterIrvine, United StatesTaking people
- University of Kansas Medical CenterKansas City, United StatesTaking people
- Booth Gardner Parkinson's Care Center (Evergreen Health)Kirkland, United StatesTaking people
- Cleveland Clinic - Las VegasLas Vegas, United StatesTaking people
- Loma Linda Medical CenterLoma Linda, United StatesNo longer taking part
- University of California, Los AngelesLos Angeles, United StatesTaking people
- University of LouisvilleLouisville, United StatesTaking people
- University of Wisconsin - MadisonMadison, United StatesTaking people
- University of Tennessee Health Science CenterMemphis, United StatesNo longer taking part
- University of MiamiMiami, United StatesTaking people
- Hennepin County Medical CenterMinneapolis, United StatesTaking people
- Vanderbilt University Medical CenterNashville, United StatesTaking people
- Rutgers, The State University of New JerseyNew Brunswick, United StatesTaking people
- Columbia UniversityNew York, United StatesTaking people
- University of Nebraska Medical CenterOmaha, United StatesTaking people
- University of PennsylvaniaPhiladelphia, United StatesTaking people
- St. Joseph's Hospital and Medical CenterPhoenix, United StatesTaking people
- University of PittsburghPittsburgh, United StatesTaking people
- Oregon Health and Science UniversityPortland, United StatesTaking people
- Virginia Commonwealth UniversityRichmond, United StatesNo longer taking part
- University of RochesterRochester, United StatesTaking people
- University of Illinois College of Medicine at RockfordRockford, United StatesNo longer taking part
- University of California - DavisSacramento, United StatesTaking people
- University of UtahSalt Lake City, United StatesTaking people
- University of California San DiegoSan Diego, United StatesTaking people
- University of California San FranciscoSan Francisco, United StatesTaking people
- University of Washington Medical CenterSeattle, United StatesTaking people
- Washington University in St. LouisSt Louis, United StatesTaking people
- University of South Florida, HDSA Center of Excellence at USFTampa, United StatesTaking people
- Georgetown UniversityWashington D.C., United StatesTaking people
- Hereditary Neurological Disease CenterWichita, United StatesTaking people
- Wake Forest School of MedicineWinston-Salem, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- CHDI Foundation, Inc.
- Trial code
- NCT01574053
- Record updated
- 28 February 2024
- Original 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.Read full original descriptionShow less
Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
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.
Inclusion: Carriers: This group comprises the primary study population and consists of individuals who carry the HD gene expansion mutation; Controls: This group comprises the comparator study population and consists of individuals who do not carry the HD expansion mutation; These two major categories can be further subdivided into six different subgroups of eligible individuals:; Manifest/Motor-manifest HD: Carriers with clinical features that are regarded in the opinion of the investigator as diagnostic of HD; Pre-Manifest/-Motor-manifest HD: Carriers without clinical features regarded as diagnostic of HD; 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; 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; Family Control: Family members or individuals not related by blood to carriers (e.g., spouses, partners, caregivers); 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; Participant status will be captured in the study database using 2 variables: 1) Investigator Determined Status: this will be based on clinical signs and symptoms and genotyping performed as part of medical care, and will be updated at every visit; and 2) Research Genotyping Status: this will be based on genotyping conducted as part of Enroll-HD study procedures. Based on research genotyping, participants will be reclassified under this variable from Genotype Unknown to 'Carriers' or 'Controls'. Investigators and participants will be blinded to this reclassification.
Exclusion: Individuals with choreic movement disorders in the context of a negative test for the HD gene mutation; For Community Controls: those individuals with a major central nervous system disorder will be excluded (e.g. stroke, Parkinson's disease, multiple sclerosis, etc.); Participants under 18 may be eligible to participate (if they have juvenile-onset HD); Individuals who do not meet inclusion criteria,.