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

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ClinicalTrials.gov Identifier: NCT01574053
Recruitment Status : Recruiting
First Posted : April 10, 2012
Last Update Posted : September 28, 2018
Sponsor:
Information provided by (Responsible Party):
CHDI Foundation, Inc.

Brief Summary:
Enroll-HD is a longitudinal, observational, multinational study that will integrate two existing Huntington's Disease (HD) registries, REGISTRY in Europe and COHORT in North America and Australia, while also expanding to include sites in Latin America and Asia. With no end date and annual assessments, the goal of Enroll-HD is to build a large and rich database of longitudinal clinical information and biospecimens. This database will serve as a basis for future studies aimed at developing tools and biomarkers for progression and prognosis, identifying clinically relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies.

Condition or disease
Huntington's Disease

Detailed Description:
The primary objective of Enroll-HD is to develop a comprehensive repository of prospective and systematically collected clinical research data (demography, clinical features, family history, genetic characteristics) and biological specimens (blood) from individuals with manifest HD, unaffected individuals known to carry the HD mutation or at risk of carrying the HD mutation, and control research participants (e.g., spouses, siblings or offspring of HD mutation carriers known not to carry the HD mutation). Enroll-HD is conceived as a broad-based and long-term project to maximize the efficiencies of non-clinical research and participation in clinical research. With over 200 sites in roughly 30 countries, Enroll HD will be the largest database available for HD researchers.

Study Type : Observational [Patient Registry]
Estimated Enrollment : 15000 participants
Observational Model: Other
Time Perspective: Prospective
Target Follow-Up Duration: 1 Year
Official Title: Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
Actual Study Start Date : July 2012
Estimated Primary Completion Date : January 2062
Estimated Study Completion Date : January 2062





Biospecimen Retention:   Samples With DNA
Blood


Information from the National Library of Medicine

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:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Patients with HD and their family members will be recruited from specialty clinics (Human Genetics, Neurology, Psychiatry) that advise and treat people affected by HD. In addition, in some areas community clinics and neurologists who see HD patients will recruit participants for this study.Participants may also receive information about the study through a website, clinical practices, support groups, advocacy newsletters, etc. and place a direct request to be considered for participation in the study. Community controls will be identified, using advertisements, flyers and newsletters, by study site staff with the support of the Enroll-HD operational staff.
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 disease, Multiple Sclerosis, etc.).

Participants under 18 may be eligible to participate (if they have juvenile-onset HD).


Information from the National Library of Medicine

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): NCT01574053


Contacts
Contact: Qura Ain (609) 945-9054 Info@Enroll-HD.org

  Hide Study Locations
Locations
United States, Alabama
University of Alabama Recruiting
Birmingham, Alabama, United States, 35233
Contact: Jenna Smith    205-996-2807    jltidwell@uabmc.edu   
Contact: candace Cromer    205-996-4034    candacecromer@uabmc.edu   
Principal Investigator: Victor Sung, MD         
Sub-Investigator: Sara Perez         
United States, Arizona
St. Joseph's Hospital and Medical Center Recruiting
Phoenix, Arizona, United States, 85013
Contact: Giulia Weyrich    602-406-4206    giulia.weyrich@dignityhealth.org   
Contact: Leslie Shelton    602-406-3719    leslie.shelton@dignityhealth.org   
Principal Investigator: Srivadee Oravivattanakul         
United States, California
University of California - Irvine Medical Center Recruiting
Irvine, California, United States, 92697
Contact: David Bisares    949-824-7524    dbisares@uci.edu   
Contact: Breana Chew    949-824-7524    chewbc@uci.edu   
Principal Investigator: Neal Hermanowicz         
Loma Linda Medical Center Terminated
Loma Linda, California, United States, 92354
University of California - Los Angeles Recruiting
Los Angeles, California, United States, 90095
Contact: Aaron Fisher    909-558-2037    adfisher@mednet.ucla.edu   
Contact: Arjun Sarkar    (310) 206-8153    asarkar@mednet.ucla.edu   
Principal Investigator: Susan Perlman         
Sub-Investigator: Yvette Bordelon         
University of California - Davis Recruiting
Sacramento, California, United States, 95817
Contact: Amanda Martin    916-734-3541    amanda.martin@ucdmc.ucdavis.edu   
Sub-Investigator: Alexandra "Sasha" Duffy         
Principal Investigator: Vicki Wheelock         
University of California - San Diego Recruiting
San Diego, California, United States, 92037
Contact: Sungmee PArk    858-246-1254    sgluhm@ucsd.edu   
Contact: Chase Snell    858-249-0569    cmsnell@ucsd.edu   
Principal Investigator: Jody Corey-Bloom         
University of California - San Francisco Recruiting
San Francisco, California, United States, 94158
Contact: Megan Casey    415-476-8791    Megan.Casey@ucsf.edu   
Contact: Nancy Cai    415 502 7640    Nancy.Cai@ucsf.edu   
Principal Investigator: Michael Geschwind         
United States, Colorado
Rocky Mountain Movement Disorder Center Recruiting
Englewood, Colorado, United States, 80113
Contact: Liza Heap    303-762-6674    heap@kumarneuro.com   
Contact: Jessica Jaynes    303-762-6674    jaynes@kumarneuro.com   
Principal Investigator: Rajeev Kumar, MD         
United States, Connecticut
University of Connecticut Recruiting
Farmington, Connecticut, United States, 06032
Contact: Robin Browne    860-679-4418    rbrowne@uchc.edu   
Principal Investigator: Kevin Manning         
United States, District of Columbia
Georgetown University Recruiting
Washington, District of Columbia, United States, 20007
Contact: Natasha Scott    202-444-0809    ns1018@georgetown.edu   
Principal Investigator: Karen Anderson         
United States, Florida
University of Florida Board of Trustees Recruiting
Gainesville, Florida, United States, 32607
Contact: Erin Monari    352-294-5030    Erin.Monari@neurology.ufl.edu   
Contact: Nikolaus McFarland    352-265-8408    nikolaus.mcfarland@neurology.ufl.edu   
Principal Investigator: Nikolaus McFarland, MD, PHD         
University of South Florida, HDSA Center of Excellence at USF Recruiting
Tampa, Florida, United States, 33612
Contact: Kolleen (Kelly) Elliott    813-974-6022    kelliot@health.usf.edu   
Principal Investigator: Juan Sanchez-Ramos, MD         
United States, Georgia
Emory University, Wesley Woods Health Center Recruiting
Atlanta, Georgia, United States, 30329
Contact: Elaine Sperin    404-728-4786    esperin@emory.edu   
Principal Investigator: Stewart Factor         
Georgia Health Sciences University Terminated
Augusta, Georgia, United States, 30912
United States, Illinois
University of Chicago Terminated
Chicago, Illinois, United States, 60637
Rush University Medical Center Recruiting
Chicago, Illinois, United States, 68612
Contact: Teresa Chmura    312-942-8002    teresa_chmura@rush.edu   
Contact: Alisa Negron    1 (312) 563-2698    Alice_Negron@rush.edu   
Principal Investigator: Jennifer Goldman         
University of Illinois College of Medicine at Rockford Terminated
Rockford, Illinois, United States, 61107
United States, Iowa
University of Iowa Recruiting
Iowa City, Iowa, United States, 52245
Contact: John Kamholz    319-335-6640    jkamholz@med.wayne.edu   
Principal Investigator: Jane Paulsen         
United States, Kansas
University of Kansas Medical Center Recruiting
Kansas City, Kansas, United States, 66160
Contact: Carolyn Gray    913-588-6983    cgray1@kumc.edu   
Principal Investigator: Richard Dubinksy, MD         
Hereditary Neurological Disease Center Recruiting
Wichita, Kansas, United States, 67206
Contact: Gregory Suter    316-609-3020    hndcentre@aol.com   
Principal Investigator: William Mallonee, MD         
United States, Kentucky
University of Louisville Recruiting
Louisville, Kentucky, United States, 40202
Contact: Annette Robinson    502-540-3585    annette.robinson@louisville.edu   
Contact: Molly E Brown    502-852-4055    mebrow22@louisville.edu   
Principal Investigator: Kathrin Lafaver         
United States, Maryland
University of Maryland School of Medicine Terminated
Baltimore, Maryland, United States, 21201
Johns Hopkins University Recruiting
Baltimore, Maryland, United States, 21287
Contact: Kia Ultz    410-955-1349    kcarte23@jhmi.edu   
Contact: Christopher Ross    410.955.2398      
Principal Investigator: Frederick Nucifora         
Sub-Investigator: Christopher Ross         
United States, Massachusetts
Boston University Medical Center Recruiting
Boston, Massachusetts, United States, 02118
Contact: Raymond James    617-638-7745    rcjames@bu.edu   
Principal Investigator: Marie-Saint Hillaire         
United States, Michigan
University of Michigan Recruiting
Ann Arbor, Michigan, United States, 48109
Contact: Jennifer Miner    734-763-3982    jenminer@med.umich.edu   
Principal Investigator: Noelle Carlozzi         
Wayne State University Terminated
Detroit, Michigan, United States, 48201
United States, Minnesota
Minneapolis Medical Research Foundation Recruiting
Minneapolis, Minnesota, United States, 55415
Contact: Dawn Radtke    612-873-2943    dawn.radtke@hcmed.org   
Contact: Sharyn Aasen    1 (612) 347-8528    saasen@mmrf.org   
Principal Investigator: Martha Nance         
United States, Missouri
Washington University in St. Louis Recruiting
Saint Louis, Missouri, United States, 63110
Contact: Stacey Barton    314-362-3471    bartons@neuro.wustl.edu   
Principal Investigator: Joel Perlmutter         
United States, Nevada
Cleveland Clinic - Las Vegas Recruiting
Las Vegas, Nevada, United States, 89102
Contact: Homan Honar    702-462-6804    honarh@ccf.org   
Principal Investigator: Zoltan Mari         
United States, New Jersey
Cooper University Hospital Recruiting
Camden, New Jersey, United States, 08103
Contact: Andrew McGarry    856-342-2460    mcgarry-andrew@cooperhealth.edu   
Principal Investigator: Amy Colcher         
Rutgers, the State University of New Jersey Recruiting
New Brunswick, New Jersey, United States, 08901
Contact: Patricia Sonsalla    732-235-8132    sonsalla@rwjm.rutgers.edu   
Principal Investigator: Daniel Schneider         
United States, New York
Albany Medical College Recruiting
Albany, New York, United States, 12208
Contact: Katy Regan    518-262-5938    regank@mail.amc.edu   
Contact: Sharon Evans    518-262-6682    evanss@mail.amc.edu   
Principal Investigator: Era Hanspal, MD         
Sub-Investigator: Eric Molho         
Columbia University Recruiting
New York, New York, United States, 10032
Contact: Paula Wasserman    212-305-4597    pl2032@cumc.columbia.edu   
Contact: Ronda Clouse    212-305-2387    rc2682@columbia.edu   
Principal Investigator: Karen Marder         
Sub-Investigator: Elan Louis         
Sub-Investigator: Sarah Perez         
University of Rochester Recruiting
Rochester, New York, United States, 14618
Contact: Amy Chesire    585-341-7519    amy_chesire@urmc.rochester.edu   
Contact: Carol Zimmerman    585-341-7500    carol_zimmerman@chet.rochester.edu   
Principal Investigator: Frederick Marshall         
Sub-Investigator: Kevin Biglan         
United States, North Carolina
Duke University Recruiting
Durham, North Carolina, United States, 27705
Contact: Peggy Perry-Trice    919-684-0865    peggy.perrytrice@duke.edu   
Principal Investigator: Burton Scott         
Sub-Investigator: Mark Stacy         
Wake Forest School of Medicine Recruiting
Winston-Salem, North Carolina, United States, 27157
Contact: Christine O'Neill    336-716-8611    Coneill@wakehealth.edu   
Contact: Jessica Harris Bargoil    336-716-3919    jmbargoi@wakehealth.edu   
Principal Investigator: Frances Walker         
United States, North Dakota
Sanford Health Recruiting
Fargo, North Dakota, United States, 58122
Contact: Patricia Skarloken    701-234-4091    patricia.skarloken@sanfordhealth.org   
Principal Investigator: Tanya Harlow         
United States, Ohio
University of Cincinatti Recruiting
Cincinnati, Ohio, United States, 42519
Contact: Jessica Doakja    513-558-0169    DOAKJA@ucmail.uc.edu   
Contact: Molly Winters    1 (513) 558-0269    molly.winters@uc.edu   
Principal Investigator: Andrew Duker         
Cleveland Clinic Recruiting
Cleveland, Ohio, United States, 44195
Contact: Chris Firestone    216-445-5637    firestc@ccf.org   
Contact: Jennifer Mule    1 (216) 444-1134    mulej@ccf.org   
Sub-Investigator: Shnehal Pater         
Principal Investigator: Anwar Ahmad         
The Ohio State University Recruiting
Columbus, Ohio, United States, 43021
Contact: Allison Seward- Daley    614-688-8672    Allison.daley@osumc.edu   
Contact: Katherine (Kate) Ambrogi    (614) 688-8672    Katherine.ambrogi@osumc.edu   
Principal Investigator: Sandra Kostyk         
United States, Pennsylvania
University of Pennsylvania Recruiting
Philadelphia, Pennsylvania, United States, 19107
Contact: Jennifer Klapper    215-829-5176    jennifer.klapper@uphs.upenn.edu   
Contact: Pedro Gonzalez-Alegre    215-829-5176    pedro.gonzalez-alegre@uphs.upenn.edu   
Principal Investigator: Pedro Gonzalez-Alegre, MD         
University of Pittsburgh Recruiting
Pittsburgh, Pennsylvania, United States, 15213
Contact: Larry Ivanco    412-692-2394    lsi1@pitt.edu   
Principal Investigator: Valerie Suski         
United States, Tennessee
University of Tennessee Health Science Center Recruiting
Memphis, Tennessee, United States, 38163
Contact: Misty Thompson    901-448-7375    mthomp82@uthsc.edu   
Principal Investigator: Mark LeDoux, MD, PhD         
Vanderbilt University Recruiting
Nashville, Tennessee, United States, 37232
Contact: Olivia Roman    615-875-1182    olivia.c.roman@vanderbilt.edu   
Principal Investigator: Daniel Claassen         
United States, Texas
Baylor College of Medicine Recruiting
Houston, Texas, United States, 77030
Contact: Christine Hunter    713-798-3951    chunter@bcm.edu   
Contact: June Elaine Adams (Elaine)    (713) 798-0106    june.adams@bcm.edu   
Principal Investigator: Joseph Jankovic         
University of Texas Health Science Center Recruiting
Houston, Texas, United States, 77030
Contact: (Leigh) Beth Latham, Ph.D.    832-325-7107    leigh.b.latham@uth.tmc.edu   
Principal Investigator: Erin Furr-Stimming         
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   
Contact: Matt Halverson    1 (801) 585-3013    matt.halverson@utah.edu   
Principal Investigator: Paolo Moretti         
United States, Vermont
University of Vermont Recruiting
Burlington, Vermont, United States, 05401
Contact: Roman Pettigrew    802-847-6039    roman.pettigrew@uvmhealth.org   
Principal Investigator: James Boyd         
United States, Virginia
University of Virginia Recruiting
Charlottesville, Virginia, United States, 22908
Contact: Dana Morrissey    434-297-5711    dlm3w@virginia.edu   
Principal Investigator: Madaline Harrison         
VCU Parkinson's and Movement Disorders Center Recruiting
Henrico, Virginia, United States, 23298
Contact: Ginger Norris    804-662-5307    vwnorris@vcu.edu   
Principal Investigator: Claudia Testa         
Sub-Investigator: Adam Rosenblatt         
United States, Washington
Booth Gardner Parkinson's Care Center (Evergreen Health) Recruiting
Kirkland, Washington, United States, 98034
Contact: Anna Fierro    425-899-5370    AMFierro@evergreenhealth.com   
Principal Investigator: Pinky Agarwal         
University of Washington Medical Center Recruiting
Seattle, Washington, United States, 98195
Contact: Debra D Castillo    206-543-3647    debradel@uw.edu   
Principal Investigator: Ali Samii         
Sub-Investigator: Thomas Bird         
Sub-Investigator: Suman Jayadev         
Argentina
Instituto de Neurociencias Buenos Aires (INEBA) Recruiting
Buenos Aires, Argentina
Contact: Emilia Gatto       egatto@ineba.net   
Contact: Maria L Pavon    54 9 11 6008 9846    mpavon@ineba.net   
Principal Investigator: Emilia Gatto         
Australia, New South Wales
Westmead Hospital Recruiting
Sydney, New South Wales, Australia, 2145
Contact: Jillian McMillan    612-98456793    jillian.mcmillan@health.nsw.gov.au   
Principal Investigator: Clement Loy         
Westmead Hospital Recruiting
Westmead, New South Wales, Australia, 2145
Contact: Jillian McMillan       jillian.mcmillan@health.nsw.gov.au   
Principal Investigator: Clement Loy         
Australia, Victoria
University of Melbourne, Academic Unit for Psychiatry of Old Age Not yet recruiting
Kew, Victoria, Australia, 3101
Contact: Stephanie Antonopoulos    +61 3 9816 0482    Stephanie.ANTONOPOULOS@svhm.org.au   
Principal Investigator: Anita Goh         
Monash University Recruiting
Melbourne, Victoria, Australia, 3800
Contact: Katie Fitzgerald       Katie.Fitzgerald@calvarycare.org.au   
Contact: Ruth Hosken       ruth.hosken@calvarycare.org.au   
Principal Investigator: Julie Stout         
Australia, Western Australia
The Neurosciences Unit, Perth Recruiting
Perth, Western Australia, Australia, 6010
Contact: Jacenta Abbott    +618 9347 6464    Neurosciences.ResearchScientist@health.wa.gov.au   
Principal Investigator: Peter Panegyres         
Australia
University of Melbourne, Royal Melbourne Hospital Recruiting
Parkville, Australia, 3052
Contact: Anita Goh    + 61 3 8387 2429    goha@unimelb.edu.au   
Contact    +61 3 8387 2483      
Belgium
University Hospitals Leuven Recruiting
Leuven, Vlaams-Brabant, Belgium, 3000
Contact: Petra Weckx    +3216341015    petra.weckx@uzleuven.be   
Contact: Win van den Berghe, Prof.       wim.vandenberghe@uzleuven.be   
Principal Investigator: Win van den Berghe, Prof.         
University Hospital Lueven/ UZ Leuven Recruiting
Leuven, Belgium, 3000
Contact: Wim Vandenberghe    + 32 16342553    wim.vandenberghe@uzleuven.be   
Contact: Petra Weckx    +32 16341015    petra.weckx@uzleuven.be   
Principal Investigator: Wim Vandenberghe         
Canada, Alberta
University of Calgary, Movement Disorders Program Recruiting
Calgary, Alberta, Canada, T2N 4N1
Contact: Lorelei Derwent    1 (403) 210-9873    derwent@ucalgary.ca   
Contact: Carol Pantella    403-220-2276    pantella@ucalgary.ca   
Principal Investigator: Justyna Sarna         
Sub-Investigator: Ranjit Ranawaya         
Sub-Investigator: Sarah Furtado         
University of Alberta Recruiting
Edmonton, Alberta, Canada, T5G 0B7
Contact: Pam King    (780)-407-5439    pam.king@albertahealthservices.ca   
Principal Investigator: Wayne Martin         
University of Alberta Hospital in Edmonton Recruiting
Edmonton, Alberta, Canada, T6G 2B7
Contact: Paul McCann    780-407-1614    Paul.McCann@albertahealthservices.ca   
Principal Investigator: Oksana Suchowersky         
Canada, British Columbia
University of British Columbia Recruiting
Vancouver, British Columbia, Canada, V6T 2B5
Contact: Tuan Le    604-822-4872    tle@cmmt.ubc.ca   
Principal Investigator: Lynn Raymond         
Canada, Ontario
Centre for Movement Disorders Recruiting
Markham, Ontario, Canada, L6B 1C9
Contact: Kimberly Thompson    905-472-7082 ext 230    kthompson@movementdisorders.ca   
Principal Investigator: Mark Guttman         
North York General Hospital Recruiting
Toronto, Ontario, Canada, M2K 1E1
Contact: Clare Gibbons    416 756 6788    clare.gibbons@nygh.on.ca   
Principal Investigator: Wai-Lun Alan Fung         
Canada, Quebec
CHUM Hospital of Notre Dame Recruiting
Montreal, Quebec, Canada, H2L 4M1
Contact: Lyne Jean    514-890-8000 ext 26470    lyne.jean.chum@ssss.gouv.qc.ca   
Contact: Monica Beland    514-890-8000 ext 26512    monica.beland.chum@ssss.gouv.qc.ca   
Principal Investigator: Sylvain Chouinard         
Sub-Investigator: Michel Panisset, MD         
Chile
CETRAM Recruiting
Santiago, Chile
Contact: Pedro Chaná       pchana@cetram.org   
Principal Investigator: Pedro Chaná         
Denmark
University Hospital of Aarhus Recruiting
Aarhus, Denmark, 8000
Contact: Charlotte G Odgaard    + 45 21555118    charodga@rm.dk   
Principal Investigator: Anette T Moller         
University Hospital of Copenhagen Recruiting
Copenhagen, Denmark, DK2100
Contact: Christina V Hansen    + 45 35456911    christina.vangsted.hansen@regionh.dk   
Principal Investigator: Lena E Hjermind         
University Hospital of Odense Recruiting
Odense, Denmark, 5000
Contact: Marianne Lundsgaard    +4565414163    Marianne.Lundsgaard@rsyd.dk   
Principal Investigator: Lene Wermuth         
France
Hôpitaux Universitaires de Strasbourg Hôpital de Hautepierre-Service de Neurologie Recruiting
Strasbourg, Alsace Lorraine, France, 67098
Contact: Fanny Huselstein    + 33(0)3.88.12.86.42    fanny.huselstein@chru-strasbourg.fr   
Contact: Christine Tranchant, MD    + 33 (0)3.88.12.85.32    christine.tranchant@chru-strasbourg.fr   
Principal Investigator: Christine Christine         
CHU Amiens-Picardie Recruiting
Amiens, France, 80054
Contact: Stéphanie Blin    +33(0)3 22 66 80 00 ext 63206      
Principal Investigator: Pierre Krystkowiak         
CHU Angers, Centre de Référence Maladies Neurogénétiques Recruiting
Angers, France, 49100
Contact: Audrey Olivier    +33(0)2.41.35.56.15    AuOlivier@chu-angers.fr   
Principal Investigator: Christophe Verny         
Hôpital Pellegrin Recruiting
Bordeaux, France, 33076
Contact: Marie-Pierre Baudier    +33(0)5.57.82.03.45    marie-pierre.baudier@chu-bordeaux.fr   
Principal Investigator: Cyril Goizet         
CHU Gabriel-Montpied Recruiting
Clermont-Ferrand, France, 63003
Contact: Dihya Benghadid    +33(0)4.73.75.40.67    dbenghadid@chu-clermontferrand.fr   
Principal Investigator: Ana-Raquel Marques         
Hôpital Henri Mondor, Centre d'Investigation Clinique Recruiting
Créteil, France, 94000
Contact: Graça Morgado    +33(0)1.49.81.37.90    graca.morgado@aphp.fr   
Principal Investigator: Anne-Catherine Bachoud-Levi         
Hôpital Roger Salengro - CHRU de Lille Recruiting
LILLE Cedex, France, 59037
Contact: Eric Decorte    +33 (0)3.20.44.59.62 ext 30583    eric.decorte@chru-lille.fr   
Principal Investigator: Clémence Simonin         
Hôpital La Timone Recruiting
Marseille, France, 13005
Contact: Laura Mundler    +33(0)4.91.38.48.72    laura.mundler@ap-hm.fr   
Principal Investigator: : Jean-Philippe Azulay         
Institut du Cerveau et de la Moelle Epinière Recruiting
Paris, France, 75646
Contact: Tiffany Monnier    +33(0)1.57.27.42.22    tiffany.monnier@icm-institute.org   
Principal Investigator: Alexandra Dürr         
Hôpital Purpan, Centre d'Investigation Clinique Recruiting
Toulouse, France, 31059
Contact: Brigitte Pouzet    +33(0)5.61.77.91.25    brigitte.pouzet@inserm.fr   
Principal Investigator: Fabienne Calvas         
Germany
University Hospital Aachen Recruiting
Aachen, Germany, 52074
Contact: Daniela Probst    +49 241 8036457    dprobst@ukaachen.de   
Principal Investigator: Kathrin Reetz         
University of Berlin Recruiting
Berlin, Germany, 10117
Contact: Stefanie Kehrer    49 30 4 50 61 72 76    stefanie.kehrer@charite.de   
Principal Investigator: Josef Priller         
St. Josef und St. Elisabeth Hospital Recruiting
Bochum, Germany, 44791
Contact: Barbara Kaminski    +49 234 509 2703    b.kaminski@klinikum-bochum.de   
Principal Investigator: Carsten Saft         
University Hospital Carl Gustav Carus Dresden Recruiting
Dresden, Germany, 01307
Contact: Simone Schmidt    +49 351- 458 2524    simone.schmidt@uniklinikum-dresden.de   
Principal Investigator: Andreas Hermann         
University Hospital Erlangen Recruiting
Erlangen, Germany, 91054
Contact: Susanne Seifert    +49 9131 8544751    susanne.seifert@uk-erlangen.de   
Principal Investigator: Jürgen Winkler         
University Medical Center Freiburg Recruiting
Freiburg, Germany, 79106
Contact: Gerit Kammel    +49761 27050010    gerit.kammel@uniklinik-freiburg.de   
Principal Investigator: Michel Rijntjes         
Medizinische Hochschule Hannover Not yet recruiting
Hannover, Germany, 30625
Contact: Rebecca Minschke       minschke.rebecca@mh-hannover.de   
Principal Investigator: Christoph Schrader         
Paracelsus Elena Klinik Kassel Recruiting
Kassel, Germany, 34128
Contact: Grit Langhans    +49 561 6009169    grit.langhans@paracelsus-kliniken.de   
Principal Investigator: Katrin Bürk         
University Hospital Schleswig-Holstein Recruiting
Lübeck, Germany, 23538
Contact: Jenny Schmalfeld    +49 451 3101 8214    Jenny.schmalfeld@neuro.uni-luebeck.de   
Principal Investigator: Alexander Münchau         
University Hospital Giessen and Marburg Terminated
Marburg, Germany, 25043
Technical University of Munich Recruiting
Munich, Germany, 81675
Contact: Antje Lüsebrink    49 89 4140 4693    antje.luesebrink@tum.de   
Principal Investigator: Adolf Weindl         
George-Huntington-Institut GmbH Recruiting
Münster, Germany, 48149
Contact: Laura Spital    +49 251 788 7880    laura.spital@ghi-muenster.de   
Principal Investigator: Ralf Reilmann         
kbo-Isar-Amper-Klinikum Taufkirchen (Vils) Recruiting
Taufkirchen, Germany, 84416
Contact: Michael Bachmaier    +49 8084 934 417    Michael.Bachmaier@kbo.de   
Principal Investigator: Ralf Marquard         
University Hopsital of Ulm Recruiting
Ulm, Germany, 89081
Contact: Sonja Trautmann    +49 731 50063083    sonja.trautmann@uni-ulm.de   
Principal Investigator: Michael Orth         
University Hospital of Wuerzburg Recruiting
Würzburg, Germany, 97080
Contact: Kerstin Noeth    +49 931 201 23674    noeth_k@ukw.de   
Principal Investigator: Kai Boelmans         
Ireland
Beaumont Hospital Recruiting
Dublin 9, Republic Of Ireland, Ireland
Contact: Fiona O'Donovan    003531 809 2233    fionaodonovan@rcsi.ie   
Principal Investigator: Niall Pender         
Italy
Fondazione IRCCS Istituto Neurologico Carlo Besta - Genetics Recruiting
Milan, MI, Italy, 20133
Contact: Lorenzo Nanetti    0039 02 23942269    Lorenzo.Nanetti@istituto-besta.it   
Principal Investigator: Caterina Mariotti         
Bari Policlinico General Hospital Recruiting
Bari, Italy, 70123
Contact: Vittorio Sciruicchio    0039 080 5596739    vsciru@tin.it   
Principal Investigator: Marina de Tommaso         
IRCCS Istituto delle Scienze Neurologiche di Bologna Recruiting
Bologna, Italy, 40139
Contact: Cesa Scaglione    0039 0514966919    cesa.scaglione@unibo.it   
Principal Investigator: Pietro Cortelli         
Università degli Studi di Genova (DINOGMI) Recruiting
Genoa, Italy, 16132
Contact: Paola Mandich    0039 0103538960    pmandich@unige.it   
Principal Investigator: Giovanni Abbruzzese         
Fondazione IRCCS Istituto Neurologico Carlo Besta - Neurology Recruiting
Milan, Italy, 20133
Contact: Simona Castagliuolo    003902 23942954    SegrHD-Neu1@istituto-besta.it   
Principal Investigator: Paola Soliveri         
University of Naples Recruiting
Napoli, Italy, I-80131
Contact: Elena Salvatore    0039 0817463711    e.salvatore@unina.it   
Principal Investigator: Giuseppe de Michele         
Università Cattolica del Sacro Cuore Recruiting
Rome, Italy, 00168
Contact: Flavia Torlizzi    0039 06 30155633    flavia.torlizzi@policlinicogemelli.it   
Principal Investigator: Anna Rita Bentivoglio         
Lega Italiana Ricerca Huntington (LIRH) Recruiting
Rome, Italy, 00185
Contact: Barbara D'Alessio    0039 800388830 (toll free, Ita    barbara.dalessio@lirh.it   
Principal Investigator: Ferdinando Squitieri         
Azienda Ospedaliera Sant'Andrea Recruiting
Rome, Italy, 00189
Contact: Silvia Romano    0039 06 33776044    silvia.romano@uniroma1.it   
Principal Investigator: Giovanni Ristori         
Netherlands
University Medical Center Groningen Recruiting
Groningen, Netherlands, 9700RB
Contact: Jesper Klooster    +31 50 3619727    j.klooster@umcg.nl   
Principal Investigator: H.P.H. Kremer         
Leiden University Medical Centre Recruiting
Leiden, Netherlands, 2300 RC
Contact: Marye Hogenboom    31 715263902    m.m.hogenboom@lumc.nl   
Principal Investigator: Raymund AC Roos         
Clinical Trial Center Maastricht B.V. Recruiting
Maastricht, Netherlands, 6202 AZ
Contact: Mayke Oosterloo    +31 43-3875062    mayke.oosterloo@mumc.nl   
Principal Investigator: Mayke Oosterloo         
New Zealand
Auckland City Hospital Recruiting
Auckland, New Zealand, 1142
Contact: Lisa Fraser    64 9 307 4949 ext 25747      
Contact: lisafraser@adhb.govt.nz         
Principal Investigator: Richard Roxburgh         
New Zealand Brain Research Institute at University of Otago Recruiting
Christchurch, New Zealand, 8011
Contact: Laura Paermentier    +64 33786662    laura.paermentier@cdhb.health.nz   
Principal Investigator: Tim Anderson         
Poland
Copernicus Podmiotem Leczniczym sp. z o.o. Recruiting
Gdansk, Poland, 80-462
Contact: Agniezska Konkel    +4858 7684560    konkel1989@gmail.com   
Principal Investigator: Witold Soltan         
Krakowska Akademia Neurologii Sp. z o.o Recruiting
Katowice, Poland, 40-588
Contact: Magdalena Łyniewska    0048 32 7894601    magda.lyniewska@gmail.com   
Principal Investigator: Monika Rudzinska         
Krakowska Akademia Neurologii Sp. z o.o Recruiting
Krakow, Poland, 31-505
Principal Investigator: Monika Rudzinska         
Solumed Centrum Medyczne Recruiting
Poznan, Poland, 60-529
Contact: Katarzyna Eszrych    0048 61 854 72 99    kasiaeszrych@interia.pl   
Principal Investigator: Daniel Zielonka         
Medical University of Warsaw Recruiting
Warsaw, Poland, 02-097
Contact: Natalia Szejko    +48 509905931    natalia.szejko@gmail.com   
Principal Investigator: Piotr Janik         
Institute of Psychiatry and Neurology, Warsaw Recruiting
Warsaw, Poland, 02-957
Contact: Grzegorz Witkowski    +48 694904208    9greg@wp.pl   
Principal Investigator: Grzegorz Witkowski         
Portugal
Central Lisbon Hospital Recruiting
Lisbon, Portugal, 1169-050
Contact: Ana Calado       al_calado@yahoo.com   
Contact: Cristina Semedo    crissemedo@gmail.com      
Principal Investigator: Ana Calado         
Spain
Hospital Infanta Cristina, Badajoz Recruiting
Badajoz, Spain, 06080
Contact: Patrocinio G Moreno    34924241992    patrociniomoreno4@hotmail.com   
Principal Investigator: Carmen D Herrera         
Hospital de Cruces Recruiting
Barakaldo, Spain, 08036
Contact: Maria AC Gill    34652721371    marianaceragil@gmail.com   
Principal Investigator: koldo Berganzo         
Hospital de la Santa Creu i Sant Pau Recruiting
Barcelona, Spain, 08025
Contact: Antonia Campolongo    34 93 556 72 53    acampolongo@santpau.cat   
Principal Investigator: Jaime Kulisevsky         
Hospital Mare de Déu de la Mercè Recruiting
Barcelona, Spain, 08035
Contact: Elvira Roca Goma    34934185826    eroca@hhscjmerced.com   
Principal Investigator: Jesús Ruíz Idiago         
Fundacion Clinic per a La Recerca Biomèdica Recruiting
Barcelona, Spain, 08036
Contact: Pilar Santacruz    34932275400 ext 3088    psanta@clinic.ub.es   
Principal Investigator: Esteban Muñoz         
Hospital Universitario de Burgos Recruiting
Burgos, Spain, 09006
Contact: Natividad Mariscal    34665803265    nati.149@hotmail.com   
Principal Investigator: Esther Cubo         
Hospital Universitario Ramón y Cajal Recruiting
Madrid, Spain, 28034
Contact: Verónica Mañanes    34626340566    vmbvmb@gmail.com   
Principal Investigator: José LL Sendón         
Fundación Jiménez Díaz Recruiting
Madrid, Spain, 28040
Contact: Asunción Martinez    34689463417    asun@euro-hd.net   
Principal Investigator: Pedro G Ruiz-Espiga         
Hospital Son Espases Recruiting
Palma De Mallorca, Spain, 07120
Contact: Dolors M Benito    34619099891    mariad.moragues@ssib.es   
Principal Investigator: Inés Legarda         
Hospital Virgen del Camino Recruiting
Pamplona, Spain, 31008
Contact: Maria D Martinez    34848429990    mmartinj@cfnavarra.es   
Principal Investigator: Maria Ramos         
Switzerland
Siloah AG Recruiting
Bern, Switzerland, 3073
Contact: Jessica Köhli    31 352 20 70    Jessica.Koehli@siloah.ch   
Principal Investigator: Jean-Marc Burgunder         
United Kingdom
Royal Devon and Exeter NHS Foundation Trust Recruiting
Exeter, Devon, United Kingdom, EX25DW
Contact: Sarah Irvine    01392406979    sarah.irvine@nhs.net   
Principal Investigator: Timothy Harrower         
Leicestershire Partnership Recruiting
Narborough, Leicestershire, United Kingdom, LE19 4SL
Contact: Caroline Hallam    0116 2951516    caroline.hallam@leicspart.nhs.uk   
Contact: Dawn Friere-Patino    +44 1509 561615    dawn.freire-patino@leicspart.nhs.uk   
Principal Investigator: Reza Kiana         
North Bristol NHS Trust Recruiting
Bristol, UK, United Kingdom, BS10 5NB
Contact: Louise Gethin    0117 4148270    Louise.Gethin@nbt.nhs.uk   
Principal Investigator: Elizabeth Coulthard         
Fife Health Board Recruiting
Kirkcaldy, UK, United Kingdom, KY1 2ND
Contact: Nicola Johns    01592 647993    nicola.johns@nhs.net   
Principal Investigator: Michael Armanyous         
Betsi Cadwaladr University Health Board Recruiting
Wrexham, UK, United Kingdom, LL13 7TD
Contact: Julia Roberts       julia.roberts@bangor.ac.uk   
Contact: Alberto Salmoiraghi    01978 726873    alberto.salmoiraghi@wales.nhs.uk   
Principal Investigator: Alberto Salmoiraghi         
University of Aberdeen Recruiting
Aberdeen, United Kingdom, AB25 2ZA
Contact: Stella Sihlabela    01224 550026    s.sihlabela@nhs.net   
Principal Investigator: Zosia Miedzybrodzka         
Birmingham and Solihull Mental Health NHS Foundation Trust Recruiting
Birmingham, United Kingdom, B15 2FG
Contact: Ellice Parkinson    0121 301 4337    Ellice.Parkinson@bsmhft.nhs.uk   
Principal Investigator: Hugh Rickards         
University of Cambridge Recruiting
Cambridge, United Kingdom, CB2 0PY
Contact: Sarah Mason    01223 331160    slm64@cam.ac.uk   
Principal Investigator: Roger Barker         
Cardiff University Recruiting
Cardiff, United Kingdom, CF24 4HQ
Contact: Rebecca Cousins    02920745237    cousinsr1@cardiff.ac.uk   
Principal Investigator: Anne Rosser         
Tayside Health Board Recruiting
Dundee, United Kingdom, DD1 9SY
Contact: Paula McFayden    01382 424196    paula.mcfayden@nhs.net   
Principal Investigator: David Goudie         
Lothian Health Board Recruiting
Edinburgh, United Kingdom, EH4 2XU
Contact: Philip Greene    0131 537 1116    Philip.Greene@nhslothian.scot.nhs.uk   
Principal Investigator: Mary Porteous         
Greater Glasgow Health Board Recruiting
Glasgow, United Kingdom, G51 4TF
Contact: Scott Farmer    0141 232 7600    Scott.Farmer@ggc.scot.nhs.uk   
Principal Investigator: Stuart Ritchie         
Ayrshire Central Hospital Withdrawn
Kilmarnock, United Kingdom, KA2 OBB
NHS Forth Valley Recruiting
Larbert, United Kingdom, FK5 4WR
Contact: David Thomson    01324 566230    dthomson1@nhs.net   
Principal Investigator: Christian Neumann         
Leeds Teaching Hospitals Recruiting
Leeds, United Kingdom, LS7 4SA
Contact: Callum Schofield    0113 3924679    callum.schofield@nhs.net   
Principal Investigator: Emma Hobson         
The Walton Centre Recruiting
Liverpool, United Kingdom, L9 7LJ
Contact: Louise Pate    +44 1515295668    louise.pate@thewaltoncentre.nhs.uk   
Contact: Sundus Alusi    +44 1515 298 520    sundus.alusi@thewaltoncentre.nhs.uk   
Principal Investigator: Rhys Davies         
Guy's and St. Thomas's NHS Foundation Trust Recruiting
London, United Kingdom, SE1 9RT
Contact: Elizabeth White    02071887865    Elizabeth.White@gstt.nhs.uk   
Principal Investigator: Thomasin Andrews         
St. George's Hospital Recruiting
London, United Kingdom, SW17 0RE
Contact: Uruj Anjum    0208 725 1067    uanjum@sgul.ac.uk   
Principal Investigator: Nayana Lahiri         
University College of London Recruiting
London, United Kingdom, WC1B SEH
Contact: Monica Lewis    020 3108 7480    m.lewis@ucl.ac.uk   
Contact: Kate Fayer    0203 108 7483    k.fayer@ucl.ac.uk   
Principal Investigator: Sarah Tabrizi         
Central Manchester University Hospitals NHS Foundation Trust Recruiting
Manchester, United Kingdom, M13 9WL
Contact: Helen Chadwick    +44 161 701 2541    helen.jones-4@manchester.ac.uk   
Principal Investigator: David Craufurd         
Northumberland, Tyne & Wear NHS Foundation Trust of St. Nicholas Hospital Recruiting
Newcastle-upon-Tyne, United Kingdom, NE3 3XT
Contact: Sarah Edwards    0191 2467392    Sarah.Edwards@ntw.nhs.uk   
Principal Investigator: Suresh Komati         
St. Andrews Healthcare Terminated
Northampton, United Kingdom, NN1 5DG
Oxford Radcliffe Hospitals Recruiting
Oxford, United Kingdom, OX3 9DU
Contact: Sarsha` Wilson    01865234607    sarsha.wilson@nhs.net   
Principal Investigator: Andrea Nemeth         
Plymouth Hospitals NHS Trust Recruiting
Plymouth, United Kingdom, PL6 8BX
Contact: Julie Frost    01872 255134    julie.frost@cornwall.nhs.uk   
Contact: Jemma Inches       jinches@nhs.net   
Principal Investigator: Rupert Noad         
Poole Hospital Recruiting
Poole, United Kingdom, BH15 2JB
Contact: Annemike Fox    01202 263210    annemieke.fox@poole.nhs.uk   
Principal Investigator: John Burn         
Royal Berkshire NHS Foundation Trust Recruiting
Reading, United Kingdom, RG1 5AN
Principal Investigator: Richard Armstrong         
Sheffield Children's NHS Foundation Trust Recruiting
Sheffield, United Kingdom, S10 2TH
Contact: Louise Patterson    0114 2260828    louise.patterson@sch.nhs.uk   
Principal Investigator: Oliver Quarrell         
University Hospital Southampton Recruiting
Southampton, United Kingdom, SO16 6YD
Contact: Lesley Mackinnon    01962824127    lesley.mackinnon@nhs.net   
Principal Investigator: Christopher Kipps         
North Staffordshire Combined Healthcare NHS Trust Recruiting
Stoke-on-Trent, United Kingdom, ST4 8HH
Contact: Karen Kennedy    017820441773    Karen.Kennedy@combined.nhs.uk   
Principal Investigator: George El-Nimr         
Avon and Wiltshire Mental Health Partnership Active, not recruiting
Swindon, United Kingdom, SN3 6BW
Sponsors and Collaborators
CHDI Foundation, Inc.
Investigators
Principal Investigator: Bernhard G Landwehrmeyer, MD, PhD University of Ulm
Study Director: Jamie Levey CHDI Foundation, Inc.

Responsible Party: CHDI Foundation, Inc.
ClinicalTrials.gov Identifier: NCT01574053     History of Changes
Other Study ID Numbers: Enroll -HD
First Posted: April 10, 2012    Key Record Dates
Last Update Posted: September 28, 2018
Last Verified: May 2018

Keywords provided by CHDI Foundation, Inc.:
Huntington's Disease
Huntington Disease
Juvenile Huntington's Disease
Registry
Cohort
CHDI

Additional relevant MeSH terms:
Huntington Disease
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Dementia
Chorea
Dyskinesias
Movement Disorders
Heredodegenerative Disorders, Nervous System
Neurodegenerative Diseases
Genetic Diseases, Inborn
Cognition Disorders
Neurocognitive Disorders
Mental Disorders