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

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details.
ClinicalTrials.gov Identifier: NCT01574053
Recruitment Status : Unknown
Verified June 2015 by CHDI Foundation, Inc..
Recruitment status was:  Recruiting
First Posted : April 10, 2012
Last Update Posted : June 3, 2015
Information provided by (Responsible Party):

Study Description
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 Design

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

Groups and Cohorts

Outcome Measures

Biospecimen Retention:   Samples With DNA

Eligibility Criteria

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, Senior)
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.

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).

Contacts and Locations

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

Contact: James Moyer EnrollHD@quintiles.com

  Hide Study Locations
United States, Alabama
University of Alabama Recruiting
Birmingham, Alabama, United States, 35233
Contact: Jenna Smith    205-996-2807    jennat@uab.edu   
Contact: Stephanie Guthrie    205-996-4033    slguth@uab.edu   
Principal Investigator: Victor Sung, MD         
Sub-Investigator: David Standaert, MD, PHD         
United States, Arizona
St. Joseph's Hospital and Medical Center Recruiting
Phoenix, Arizona, United States, 85013
Contact: Edie Simpson    602-406-4032    edie.simpson@dignityhealth.org   
Contact: Chanti Johnson-Smith    602-406-4032    chanti.johnson-smith@chw.edu   
Principal Investigator: Rohit Dhall         
Sub-Investigator: Naomi Salins         
United States, California
University of California - Irvine Medical Center Recruiting
Irvine, California, United States, 92697
Contact: Shari Niswonger    949-824-8116    slniswon@uci.edu   
Contact: Edward Ceballos    949-824-3485    e.ceballos@uci.edu   
Principal Investigator: Neal Hermanowicz         
Loma Linda Medical Center Recruiting
Loma Linda, California, United States, 92354
Contact: Sheba Baroya       SBaroya@llu.edu   
Principal Investigator: Khashayer Dashtipour         
University of California - Los Angeles Recruiting
Los Angeles, California, United States, 90095
Contact: Brian Clemente    310-794-1225    bclemente@mednet.ucla.edu   
Contact: Arik Johnson, PsyD       acjohnson@mednet.ucla.edu   
Principal Investigator: Susan Perlman         
Sub-Investigator: Yvette Bordelon         
Sub-Investigator: Sandeep Thakkar, DO         
University of California - Davis Recruiting
Sacramento, California, United States, 95817
Contact: Teresa Tempkin    916-734-6525    teresa.tempkin@ucdmc.ucdavis.edu   
Sub-Investigator: Terry Tempkin         
Principal Investigator: Vicki Wheelock         
University of California - San Diego Recruiting
San Diego, California, United States, 92037
Contact: Shea Gluhm    858-246-1254    sgluhm@ucsd.edu   
Principal Investigator: Jody Corey-Bloom         
University of California - San Francisco Recruiting
San Francisco, California, United States, 94158
Contact: Joseph Winer    415-476-2909    jwiner@memory.ucsf.edu   
Contact: Sven Forner    415-476-2901    sforner@memory.ucsf.edu   
Principal Investigator: Michael Geschwind         
Sub-Investigator: Gail Kang         
Sub-Investigator: Adam Boxer         
Sub-Investigator: Sharon Sha         
United States, Colorado
Rocky Mountain Movement Disorder Center Recruiting
Englewood, Colorado, United States, 80113
Contact: Christina Reeves    303-357-5455    reeves@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: Alexis Carlson    941-586-6804    asc73@georgetown.edu   
Principal Investigator: Karen Anderson         
United States, Florida
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: Randi Jones         
Sub-Investigator: Stewart Factor         
Georgia Health Sciences University Recruiting
Augusta, Georgia, United States, 30912
Contact: Paula Jackson    706-721-4152    paujackson@georgiahealth.edu   
Principal Investigator: John Morgan         
United States, Illinois
University of Chicago Recruiting
Chicago, Illinois, United States, 60637
Contact: Joan Young    773-702-4392    jyoung@neurology.bsd.uchicago.edu   
Principal Investigator: Tao Xie         
Sub-Investigator: Un Jung Kang         
Rush University Medical Center Recruiting
Chicago, Illinois, United States, 68612
Contact: Teresa Chmura    312-942-8002    teresa_chmura@rush.edu   
Contact: Jeana Jaglin    312-563-2900    jean_jaglin@rush.edu   
Principal Investigator: Kathleen Shannon         
University of Illinois College of Medicine at Rockford Recruiting
Rockford, Illinois, United States, 61107
Contact: Sadie Foster    815-271-7101    sadie@sfoster.com   
Contact: Andrea Escobar    815-395-5635    escobare@uic.edu   
Principal Investigator: Mitch King         
United States, Iowa
University of Iowa Recruiting
Iowa City, Iowa, United States, 52245
Contact: Amanda Miller    319-335-6640    amanda-c-miller@uiowa.edu   
Principal Investigator: Jane Paulsen         
United States, Kansas
University of Kansas Medical Center Recruiting
Kansas City, Kansas, United States, 66160
Contact: Carolyn Gray    816-922-2756    cgray1@kumc.edu   
Principal Investigator: Richard Dubinksy, MD         
Hereditary Neurological Disease Center Recruiting
Wichita, Kansas, United States, 67206
Contact: Gregory Suter    316-721-9250    hndcentre@aol.com   
Principal Investigator: William Mallonee, MD         
United States, Maryland
University of Maryland School of Medicine Recruiting
Baltimore, Maryland, United States, 21201
Contact: Lauren Doyle    410-328-6238    ldoyle@fpi.umaryland.edu   
Principal Investigator: Christian Lachner         
Johns Hopkins University Recruiting
Baltimore, Maryland, United States, 21287
Contact: Gregory Churchill    410-955-1349    gchurch3@jhu.edu   
Principal Investigator: Frederick Nucifora         
Sub-Investigator: Christopher Ross         
United States, Massachusetts
Boston University Medical Center Recruiting
Boston, Massachusetts, United States, 02118
Contact: Denyse Turpin    617-638-7736    Denyse.Turpin@bmc.org   
Principal Investigator: Samuel Frank         
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 Recruiting
Detroit, Michigan, United States, 48201
Contact: Kelly Kennelly    313-577-8317    kkennel@med.wayne.edu   
Principal Investigator: Edwin George         
United States, Minnesota
Hennepin County Medical Center Recruiting
Minneapolis 55415, Minnesota, United States, 55415
Contact: Dawn Radtke    612-873-4165    dawn.radtke@yahoo.com   
Contact: Catherine Wielinski    612-873-4165    wielic@parknicollet.com   
Principal Investigator: Martha Nance         
United States, Missouri
Washington University in St. Louis Recruiting
St. Louis, Missouri, United States, 63110
Contact: Stacey Barton    314-362-3471    bartons@neuro.wustl.edu   
Principal Investigator: Joel Perlmutter         
Sub-Investigator: Susan Criswell         
United States, Nevada
Cleveland Clinic - Las Vegas Recruiting
Las Vegas, Nevada, United States, 89102
Contact: Yolande Mucharbach    702-685-7070    muchary@ccf.org   
Principal Investigator: Ryan Walsh         
United States, New Jersey
Cooper University Hospital Recruiting
Camden, New Jersey, United States, 08103
Contact: Cory Hackmyer    856-342-2460    hackmyer-cory@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: Mary Eglow    518-262-6651    eglowm@mail.amc.edu   
Contact: Sharon Evans    518-262-6682    evanss@mail.amc.edu   
Principal Investigator: Era Hanspal, MD         
Sub-Investigator: Adolfo Ramirez-Zamora, MD         
Sub-Investigator: Dzintra Clemins, MD         
Columbia University Recruiting
New York, New York, United States, 10032
Contact: Paula Wasserman    212-305-4597    pleber@sergievsky.cpmc.columbia.edu   
Contact: Ronda Clouse    212-305-2387    rc2682@columbia.edu   
Principal Investigator: Karen Marder         
Sub-Investigator: Elan Louis         
Sub-Investigator: Sarah Janicki         
Sub-Investigator: Pietro Mazzoni         
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       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
Cinncinnati, Ohio, United States, 42519
Contact: Maureen Gartner    513-558-0018    gartnem@ucmail.uc.edu   
Contact: Rosa Cama       camari@ucmail.uc.edu   
Principal Investigator: Andrew Duker         
Cleveland Clinic Recruiting
Cleveland, Ohio, United States, 44195
Contact: Nancy Monahan    216-445-5637    MONAHAN@ccf.org   
Contact: Michael Lengen    216-445-7110    lengenm@ccf.org   
Sub-Investigator: Anwar Ahmed         
Principal Investigator: Mayur Pandya         
The Ohio State University Recruiting
Columbus, Ohio, United States, 43021
Contact: Allison Seward    614-688-8672    allison.seward@osumc.edu   
Contact: Paige Pancake       paige.pancake@osumc.edu   
Principal Investigator: Sandra Kostyk         
United States, Pennsylvania
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: Phani Talasila    901-448-7375    ptalasil@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: Erica Thomas    713-798-6902    thomassm@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: Maria North    801-581-7978    maria.north@hsc.utah.edu   
Principal Investigator: David Shprecher         
United States, Vermont
University of Vermont Recruiting
Burlington, Vermont, United States, 05401
Contact: Emily Houston    802-847-4589    emily.houston@med.uvm.edu   
Principal Investigator: James Boyd         
United States, Virginia
University of Virginia Recruiting
Charlottesville, Virginia, United States, 22908
Contact: Sue Raju    434-924-9977    sr2z@hscmail.mcc.virginia.edu   
Contact: Susan Dietrich    434-243-5422    sjd3c@virginia.edu   
Principal Investigator: Madaline Harrison         
VCU Parkinson's and Movement Disorders Center Recruiting
Richmond, Virginia, United States, 23298
Contact: Ginger Norris    804-828-0870    vwnorris@vcu.edu   
Contact: Vicki Humphreys    804-828-3747    humphreysmv@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: Marsha Merrick    425-899-3115    mgmerrick@evergreenhealthcare.org   
Principal Investigator: Pinky Agarwal         
University of Washington Medical Center Recruiting
Seattle, Washington, United States, 98195
Contact: Emiley Freney    206-543-3647    efreney@uw.edu   
Principal Investigator: Ali Samii         
Sub-Investigator: Thomas Bird         
Sub-Investigator: Suman Jayadev         
Instituto Frenopático Active, not recruiting
Buenos Aires, Argentina
Australia, New South Wales
Westmead Hospital Recruiting
Sydney, New South Wales, Australia, 2145
Contact: Jillian Attewell    612-98456793    Jillian_Attewell@mq.edu.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: Sue Caldwell    +61 39 5953288    sue.caldwell@calvalrycare.org.au   
Contact: Melinda Holt       melinda.holt@monash.edu   
Principal Investigator: Andrew Churchyard         
Australia, Western Australia
The Neurosciences Unit, Perth Recruiting
Perth, Western Australia, Australia, 6010
Contact: Maria Tedesco    +618 9347 6464    maria.tedesco@health.wa.gov.au   
Principal Investigator: Peter Panegyres         
Canada, Alberta
University of Calgary, Movement Disorders Program Recruiting
Calgary, Alberta, Canada, T2N 4N1
Contact: Lorelei Derwent    403-220-8413    derwent@ucalgary.ca   
Contact: Carol Pantella    403-220-2276    pantella@ucalgary.ca   
Principal Investigator: Sarah Furtado         
Sub-Investigator: Ranjit Ranawaya         
University of Alberta Recruiting
Edmonton, Alberta, Canada, T5G 0B7
Contact: Pam King    780-735-6138    pam.king@albertahealthservices.ca   
Principal Investigator: Wayne Martin         
Sub-Investigator: Marguerite Wieler         
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: Allison Coleman    604-822-7739    allison@cmmt.ubc.ca   
Principal Investigator: Lynn Raymond         
Canada, Ontario
Centre for Movement Disorders Recruiting
Markham, Ontario, Canada, L6B 1C9
Contact: Alanna Sheinberg    905-472-7082 ext 230    asheinberg@movementdisorders.ca   
Contact: Albie Law    905-472-7082 ext 229    alaw@movementdisorders.ca   
Sub-Investigator: John Adams         
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: Alan Fung         
Canada, Quebec
CHUM Hospital of Notre Dame Recruiting
Montreal, Quebec, Canada, H2L 4M1
Contact: Suzanne Paris    514-890-8000 ext 26511    suzanne.paris.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         
CETRAM Recruiting
Santiago, Chile
Contact: Francisco Fuentealba       ffuentealba@cetram.org   
Principal Investigator: Pedro Chaná         
University Hospital of Aarhus Recruiting
Aarhus, Denmark, 8000
Contact: Louise H Madsen    78463333    louismad@rm.dk   
Principal Investigator: Anette T Moller         
University Hospital of Copenhagen Recruiting
Copenhagen, Denmark, DK2100
Contact: Oda Jakobsen    4535456705    oda.jakobsen@regionh.dk   
Principal Investigator: Jorgen E Nielsen         
University Hospital of Odense Recruiting
Odense, Denmark, 5000
Contact: Annette Lolk    4565414163    annette.lolk@ouh.rsyd.dk   
Principal Investigator: Lene Wermuth         
University Hospital Aachen Recruiting
Aachen, Germany, 52074
Contact: Daniela Probst    +49 241 8036457    dprobst@ukaachen.de   
Principal Investigator: Johannes Schiefer         
University of Berlin Recruiting
Berlin, Germany, 10117
Contact: Markus Beuth    49 30 4 50 51 72 09    markus.beuth@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 Not yet recruiting
Dresden, Germany, 01307
Contact: Anke Wobst    49 3514582532    anke.wobst@uniklinikum-dresden.de   
Principal Investigator: Alexander Storch         
University Hospital Erlangen Recruiting
Erlangen, Germany, 91054
Contact: Christina Kozay    +49 9131 8544308    christina.kozay@uk-erlangen.de   
Principal Investigator: Zacharias Kohl         
University Medical Center Freiburg Recruiting
Freiburg, Germany, 79106
Principal Investigator: Simone Meier         
Medizinische Hochschule Hannover Not yet recruiting
Hannover, Germany, 30625
Contact: Rebecca Minschke       minschke.rebecca@mh-hannover.de   
Principal Investigator: Christoph Schrader         
University Hospital Schleswig-Holstein Recruiting
Lübeck, Germany, 23538
Contact: Jenny Schmalfeld    +49 451 2903424    Jenny.schmalfeld@neuro.uni-luebeck.de   
Principal Investigator: Alexander Münchau         
University Hospital Giessen and Marburg Recruiting
Marburg, Germany, 25043
Contact: Katrin Buerk    49 6421 5861282    buerk@med.uni-marburg.de   
Principal Investigator: Katrin Buerk         
Technical University of Munich Recruiting
Munich, Germany, 81675
Contact: Antje Lüsebrink    49 89 4140 4693    luesebrink@lrz.tum.de   
Principal Investigator: Adolf Weindl         
George-Huntington-Institut GmbH Recruiting
Münster, Germany, 48149
Contact: Nicole Göpfert    +49 251 788 7880    nicole.goepfert@ghi.muenster.de   
Principal Investigator: Ralf Reilmann         
Isar-Amper-Klinikum GmbH Klinik Taufkirchen Recruiting
Taufkirchen, Germany, 84416
Contact: Michael Bachmaier    +49 8084 934 417    m.bachmaier@iak-kt.de   
Principal Investigator: Matthias Dose         
University Hopsital of Ulm Recruiting
Ulm, Germany, 89081
Contact: Sonja Trautmann    +49 731 50063081    sonja.trautmann@uni-ulm.de   
Principal Investigator: Bernhard Landwehrmeyer         
University Hospital of Wuerzburg Recruiting
Wuerzburg, Germany, 97080
Contact: Kerstin Noeth    931 201 23674    noeth_k@ukw.de   
Principal Investigator: Stephan Klebe         
Lega Italiana Ricerca Huntington Recruiting
Pozzilli, IS, Italy, 86077
Contact: Barbara D'Alessio    39 3932156518    barbara.dalessio@lirh.it   
Principal Investigator: Ferdinando Squitieri         
Fondazione IRCCS Istituto Neurologico Carlo Besta - Genetics Recruiting
Milan, MI, Italy, 20133
Contact: Caterina Mariotti    0039 02 23942269    mariotti.c@istituto-besta.it   
Principal Investigator: Lorenzo Nanetti         
Bari Policlinico General Hospital Recruiting
Bari, Italy, 70123
Contact: Claudia Serpino    393485442328    claudia.serpino@gmail.com   
Principal Investigator: Marina de Tommaso         
IRCCS Istituto delle Scienze Neurologiche di Bologna Not yet recruiting
Bologna, Italy, 40139
Contact: Cesa Scaglione       cesa.scaglione@unibo.it   
Principal Investigator: Pietro Cortelli         
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    393356096228    e.salvatore@unina.it   
Principal Investigator: Giuseppe de Michele         
Azienda Ospedaliera Universitaria di Perugia Recruiting
Perugia, Italy, 06132
Contact: Nicola Tambasco    0039-075-5783830    n.tambasco@libero.it   
Principal Investigator: Paolo Calabresi         
Università Cattolica del Sacro Cuore Recruiting
Rome, Italy, 00168
Contact: Flavia Torlizzi    0039 338 8069142    flavia.torlizzi@rm.unicatt.it   
Principal Investigator: Anna Rita Bentivoglio         
Azienda Ospedaliera Sant'Andrea Recruiting
Rome, Italy, 00189
Contact: Silvia Romano       silvia.romano@uniroma1.it   
Principal Investigator: Giovanni Ristori         
University Medical Center Groningen Recruiting
Groningen, Netherlands, 9700RB
Contact: Jesper Klooster       j.klooster@umcg.nl   
Principal Investigator: H.P.H. Kremer         
Leiden University Medical Centre Recruiting
Leiden, Netherlands, 2300 RC
Contact: Verena Baake    31 715266149    v.baake@lumc.nl   
Principal Investigator: Raymund Roos         
Clinical Trial Center Maastricht B.V. Recruiting
Maastricht, Netherlands, 6202 AZ
Contact: Mirella Waber    3143 3872901    m.waber@mumc.nl   
Principal Investigator: Mayke Oosterloo         
New Zealand
Auckland City Hospital Recruiting
Auckland, New Zealand, 1142
Contact: Virginia Hogg    +64 93074949    vhogg@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         
Copernicus Podmiotem Leczniczym sp. z o.o. Recruiting
Gdansk, Poland, 80-462
Contact: Agniezska Konkel       konkel1989@gmail.com   
Principal Investigator: Witold Soltan         
Silesian Medical University Katowice Recruiting
Katowice, Poland, 40-588
Contact: Daniel Stompel    0048 508-463222    dast@mp.pl   
Principal Investigator: Monika Rudzinska         
Krakowska Akademia Neurologii Sp. z o.o Recruiting
Krakow, Poland, 31-505
Principal Investigator: Monika Rudzinska         
Poznan University of Medical Sciences Recruiting
Poznan, Poland, 60-356
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: Anna Gogol    48 501 559 141    ankalb@gmail.com   
Principal Investigator: Piotr Janik         
Institute of Psychiatry and Neurology, Warsaw Recruiting
Warsaw, Poland, 02-957
Contact: Karolina Jakutowicz    48 601 175 964    jakutowicz@ipin.edu.pl   
Principal Investigator: Grzegorz Witkowski         
Hospital de la Santa Creu i Sant Pau Not yet 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 Not yet recruiting
Barcelona, Spain, 08035
Contact: Elvira Roca Goma    34934185826    eroca@hhscjmerced.com   
Principal Investigator: Jesús Ruíz Idiago         
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         
Fife Health Board Recruiting
Kirkcaldy, Fife, United Kingdom, KY1 2ND
Contact: Nicola Johns    01592 647993    nicola.johns@nhs.net   
Principal Investigator: Gareth Thomas         
University of Aberdeen Recruiting
Aberdeen, United Kingdom, AB25 2ZA
Contact: Daniela Rae    01224 552120    d.rae@nhs.net   
Principal Investigator: Zosia Miedzybrodzka         
Birmingham and Solihull Mental Health NHS Foundation Trust Recruiting
Birmingham, United Kingdom, B15 2FG
Contact: John Piedad    +44 121 3012068    j.c.p.piedad@bham.ac.uk   
Contact: Jenny De Souza    +44 121 3012363    jck543@bham.ac.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 & Vale University Recruiting
Cardiff, United Kingdom, CF24 4HQ
Contact: Rebecca Cousins    2920745237    cousinsr1@cardiff.ac.uk   
Principal Investigator: Anne Rosser         
Tayside Health Board Recruiting
Dundee, United Kingdom, DD1 9SY
Contact: Paula McFayden    01328 425549    paula.mcfayden@nhs.net   
Principal Investigator: David Goudie         
Lothian Health Board Recruiting
Edinburgh, United Kingdom, EH4 2XU
Contact: Marie McGill    0131 537 1062    marie.mcgill@nhs.net   
Principal Investigator: Mary Porteous         
Greater Glasgow Health Board Recruiting
Glasgow, United Kingdom, G51 4TF
Contact: Catherine Deith    0141 232 7600    catherine.deith@ggc.scot.nhs.uk   
Principal Investigator: Stuart Ritchie         
Leicestershire Partnership Recruiting
Kegworth, United Kingdom, DE74 2EJ
Contact: Caroline Hallam    +44 1509 561615    caroline.hallam@leicspart.nhs.uk   
Contact: Dawn Friere-Patino    +44 1509 561615    dawn.freire-patino@leicspart.nhs.uk   
Principal Investigator: Julia Middleton         
Ayrshire Central Hospital Recruiting
Kilmarnock, United Kingdom, KA2 OBB
Contact: Margo Henry       Margo.Henry@aaaht.scot.nhs.uk   
Principal Investigator: Tim Johnston         
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: Elizabeth Rowett    1133924417    elizabeth.rowett@leedsth.nhs.uk   
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: Andrew Dougherty    020 7848 5355    andrew.dougherty@kcl.ac.uk   
Principal Investigator: Thomasin Andrews         
St. George's Hospital Recruiting
London, United Kingdom, SW17 0RE
Contact: Nayana Lahiri       nayana.lahiri@nhs.net   
Principal Investigator: Meriel McEntagart         
University College of London Recruiting
London, United Kingdom, WC1N 3JZ
Contact: Monica Lewis    020 344 84056    m.lewis@ucl.ac.uk   
Contact: Nicci Robertson    0207 611 0126    nicci.robertson@ucl.ac.uk   
Principal Investigator: Sarah Tabrizi         
Central Manchester University Hospitals NHS Foundation Trust Recruiting
Manchester, United Kingdom, M13 9WL
Contact: Dawn Rogers    +44 161 701 2541    dawn.rogers@manchester.ac.uk   
Contact: Cheryl Stopford    +44 161 701 2540    cheryl.stopford@manchester.ac.uk   
Principal Investigator: David Crauford         
Northumberland, Tyne & Wear NHS Foundation Trust of St. Nicholas Hospital Recruiting
Newcastle-upon-Tyne, United Kingdom, NE3 3XT
Contact: Jill Davison    0191 2232740    jill.davison@ntw.nhs.uk   
Principal Investigator: Suresh Komati         
St. Andrews Healthcare Recruiting
Northampton, United Kingdom, NN1 5DG
Contact: Mari O'Neill    01604 616000    mkoneill@standrew.co.uk   
Principal Investigator: Elvina Chu         
Oxford Radcliffe Hospitals Recruiting
Oxford, United Kingdom, OX3 9DU
Contact: Kathryn Dixon       kathryn.dixon2@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   
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
Contact: Kathryn Dixon    1865234614    kathryn.dixon2@nhs.net   
Principal Investigator: Richard Armstrong         
Sheffield Children's NHS Foundation Trust Recruiting
Sheffield, United Kingdom, S10 2TH
Contact: Tom Miller    0114 3053082    tom.miller@sch.nhs.uk   
Principal Investigator: Oliver Quarrell         
University Hospital Southampton Recruiting
Southampton, United Kingdom, SO16 6YD
Contact: Elaine Hayward    023 8120 4989    elaine.hayward@uhs.nhs.uk   
Principal Investigator: Christopher Kipps         
North Staffordshire Combined Healthcare NHS Trust Recruiting
Stoke-on-Trent, United Kingdom, ST4 8HH
Contact: Dawn Richardson    01782 441773    dawn.richardson@northstaffs.nhs.uk   
Principal Investigator: George El-Nimr         
Avon and Wiltshire Mental Health Partnership Recruiting
Swindon, United Kingdom, SN3 6BW
Contact: Pamela Bethwaite    0191 2232740    pamela.bethwaite@awp.nhs.uk   
Principal Investigator: Lesley Gowers         
Sponsors and Collaborators
CHDI Foundation, Inc.
Principal Investigator: Bernhard G Landwehrmeyer, MD, PhD University of Ulm
Study Director: Joseph Giuliano CHDI Management Inc.
More Information

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: June 3, 2015
Last Verified: June 2015

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

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