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

CHDI Foundation, Inc. · NCT01574053

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Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Ages 18+ · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
35000
US sites recruiting
52
Study start
July 2012
Record last updated
February 28, 2024

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

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.

Conditions: Huntington's Disease

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

Inclusion Criteria

  • 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 Criteria

  • Individuals who do not meet inclusion criteria,
  • 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).

Recruiting US locations

  • University of Alabama

    Birmingham, AL 35294

    Site contact: Jenna Smith · 205-996-2807 · jltidwell@uabmc.edu

  • St. Joseph's Hospital and Medical Center

    Phoenix, AZ 85013

    Site contact: Aleksander Gomez · 602-406-3719 · aleksander.gomez@commonspirit.org

  • University of California - Irvine Medical Center

    Irvine, CA 92697

    Site contact: Veronica Martin · 714-456-7760 · vero@hs.uci.edu

  • University of California - Los Angeles

    Los Angeles, CA 90095

    Site contact: Aaron Fisher · 310-794-1225 · adfisher@mednet.ucla.edu

  • University of California - Davis

    Sacramento, CA 95817

    Site contact: Rajwant Singh · 916-734-6278 · rajsin@ucdavis.edu

  • University of California - San Diego

    San Diego, CA 92037

    Site contact: Sean Patel · 858-249-0568 · svp004@health.ucsd.edu

  • University of California - San Francisco

    San Francisco, CA 94158

    Site contact: Zach Lamson · 415-502-0670 · zach.lamson@ucsf.edu

  • Cenexel Rocky Mountain Clinical Research, LLC

    Englewood, CO 80113

    Site contact: Liza Heap · 303-762-6674 · e.heap@cenexel.com

  • University of Connecticut

    Farmington, CT 06032

    Site contact: Robin Zingales-Browne · 860-679-4418 · rbrowne@uchc.edu

  • Georgetown University

    Washington D.C., DC 20007

    Site contact: Erin Koppel · 202-687-1525 · ek875@georgetown.edu

  • University of Florida Board of Trustees

    Gainesville, FL 32607

    Site contact: Randy Foli · 352-733-2433 · randy.foli@neurology.ufl.edu

  • University of Miami

    Miami, FL 33431

    Site contact: Wilfredo Rodriguez Somoza · 561-939-4169 · wxr205@med.miami.edu

  • University of South Florida, HDSA Center of Excellence at USF

    Tampa, FL 33612

    Site contact: Kelly Elliott · 813-974-6022 · kelliot@usf.edu

  • Emory University, Wesley Woods Health Center

    Atlanta, GA 30329

    Site contact: Elaine Sperin · 404-712-7044 · esperin@emory.edu

  • Northwestern University

    Chicago, IL 60611

    Site contact: Zsa Zsa Brown · 312-503-4121 · zsazsa.brown@northwestern.edu

  • Rush University Medical Center

    Chicago, IL 68612

    Site contact: Tyler Svymbersky · 312-563-0676 · tyler_svymbersky@rush.edu

  • Indiana University

    Indianapolis, IN 46202

    Site contact: Courtney Gatza · 317-274-9657 · cgatza@iupui.edu

  • University of Iowa

    Iowa City, IA 52245

    Site contact: Julie Koeppel · 319-353-4551 · julie-koeppel@uiowa.edu

  • University of Kansas Medical Center

    Kansas City, KS 66160

    Site contact: Cameron Zoraghchi · 913-588-0667 · czoraghchi2@kumc.edu

  • Hereditary Neurological Disease Center

    Wichita, KS 67226

    Site contact: Gregory Suter · 316-609-3020 · hndcentre@aol.com

  • University of Louisville

    Louisville, KY 40202

    Site contact: Annette Robinson · 502-540-3585 · annette.robinson@louisville.edu

  • Johns Hopkins University

    Baltimore, MD 21287

    Site contact: Etta Goldman · 410-614-9483 · egoldm17@jhmi.edu

  • Beth Israel Deaconess Medical Center

    Boston, MA 02215

    Site contact: Sophia Antonioli · 617-667-2355 · santoni1@bidmc.harvard.edu

  • University of Michigan

    Ann Arbor, MI 48105

    Site contact: Chris Graves · 734-764-0644 · gravesch@med.umich.edu

  • Hennepin County Medical Center

    Minneapolis, MN 55415

    Site contact: Dawn Radtke · 612-873-2943 · dawn.radtke@hcmed.org

  • Washington University in St. Louis

    St Louis, MO 63110

    Site contact: Stacey Barton · 314-362-3471 · bartons@neuro.wustl.edu

  • University of Nebraska Medical Center

    Omaha, NE 68106

    Site contact: Nick Miller · 402-552-6241 · nicholas.miller@unmc.edu

  • Cleveland Clinic - Las Vegas

    Las Vegas, NV 89102

    Site contact: Liliana Dumitrescu · 702-483-6016 · dumitrl@ccf.org

  • Rutgers, the State University of New Jersey

    New Brunswick, NJ 08901

    Site contact: Sheila Redding · 732-235-7718 · sr1238@rwjms.rutgers.edu

  • Albany Medical College

    Albany, NY 12208

    Site contact: Alicia Leader · 518-262-6682 · downeya@amc.edu

  • Columbia University

    New York, NY 10032

    Site contact: Paula Wasserman · 212-305-4597 · pl2032@cumc.columbia.edu

  • University of Rochester

    Rochester, NY 14618

    Site contact: Hannah Mesmer · 585-341-7500 · hannah_mesmer@urmc.rochester.edu

  • Duke University

    Durham, NC 27705

    Site contact: Michelle Moshkowitz · 919-664-0865 · michelle.moshkowitz@duke.edu

  • Wake Forest School of Medicine

    Winston-Salem, NC 27157

    Site contact: Summer Harris · 336-716-3919 · sdharris@wakehealth.edu

  • Sanford Health

    Fargo, ND 58122

    Site contact: Destini Spaeth · 701-234-2474 · destini.spaeth@sanfordhealth.org

  • University of Cincinatti

    Cincinnati, OH 42519

    Site contact: Bobbie Stubbeman · 513-558-0142 · stubbebl@ucmail.uc.edu

  • Cleveland Clinic

    Cleveland, OH 44195

    Site contact: Courtney Cannon · 216-445-5637 · cannonc2@ccf.org

  • The Ohio State University

    Columbus, OH 43021

    Site contact: Kaleigh Clevenger · 614-257-2784 · kaleigh.clevenger@osumc.edu

  • Oregon Health and Science University

    Portland, OR 97239

    Site contact: Emily Leonard · 503-367-4719 · leonarde@ohsu.edu

  • University of Pennsylvania

    Philadelphia, PA 19107

    Site contact: Jennifer Klapper · 215-829-5176 · jennifer.klapper@pennmedicine.upenn.edu

  • University of Pittsburgh

    Pittsburgh, PA 15213

    Site contact: Patricia Conlon · 412-692-2394 · patricia.conlon@pitt.edu

  • University of South Carolina

    Columbia, SC 29203

    Site contact: Michael Parrish · 803-545-6103 · michael.parrish@prismahealth.org

  • Vanderbilt University Medical Center

    Nashville, TN 37232

    Site contact: Elizabeth Huitz · 615-936-1007 · elizabeth.huitz@vumc.org

  • Baylor College of Medicine

    Houston, TX 77030

    Site contact: Clarissa Sanchez · 713-798-5120 · clarissa.sanchez@bcm.edu

  • University of Texas Health Science Center

    Houston, TX 77030

    Site contact: Brittany Duncan · 713-486-3134 · brittany.j.duncan@uth.tmc.edu

  • University of Utah

    Salt Lake City, UT 84108

    Site contact: Paola Wall · 801-581-4543 · paola.wall@hsc.utah.edu

  • University of Vermont

    Burlington, VT 05401

    Site contact: Jasmine Marsh · 802-847-1597 · jasmine.marsh@uvmhealth.org

  • University of Virginia

    Charlottesville, VA 22908

    Site contact: Lauren Miller · 434-982-6599 · fdk5dn@virginia.edu

  • Virginia Commonwealth University Parkinson's and Movement Disorders Center

    Henrico, VA 23298

    Site contact: Kara McHaney · 804-628-1809 · kara.mchaney@vcuhealth.org

  • Booth Gardner Parkinson's Care Center (Evergreen Health)

    Kirkland, WA 98034

    Site contact: Anthony Sander · 425-899-5416 · agsader@evergreenhealthcare.org

  • University of Washington Medical Center

    Seattle, WA 98195

    Site contact: Amy Good · 206-543-5933 · amygood@uw.edu

  • University of Wisconsin - Madison

    Madison, WI 53705

    Site contact: Kim Janko · 608-262-8027 · janko@neurology.wisc.edu

Study contacts (from the official record)

  • Noopur Modi · Info@Enroll-HD.org
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Enroll -HD: A Prospective Registry Study in a Global Huntington's… (NCT01574053) | Bored Studies