AzTrials
AzTrials

Huntington's DiseaseNCT01574053

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

An observational study of Huntington's Disease, run by CHDI Foundation, Inc. at 183 sites in 20 countries.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
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Trial summary

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. Read more about this study

Who is it for?
Ages 18 years and olderHealthy volunteers can take part
Conditions the study is for
Huntington's Disease
How many people
35,000 participants
Where
183 sitesin 20 countries
Study dates
Jul 2012to Jan 2062
How long will I take part?
1 Year
Phase
Observational
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • All sexes
  • Healthy volunteers accepted
  • Adult, Older adult

Study population: Patients with HD and their family members are 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 recruit participants for this study. Participants also receive information about the study through websites, clinical practices, support groups, advocacy newsletters, etc. and place a direct request to be considered for participation in the study. Community controls are identified by study site staff (using advertisements, flyers and newsletters) with the support of the Enroll-HD operational staff.

Who may be able to join

  • 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.
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  • 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.

Who cannot join

  • 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).

Trial locations and contacts

183 sites in 20 countries. Contact the study team or a site near you to ask about taking part.

Noopur Modi contact

Info@Enroll-HD.org

183 sites in 20 countries

United States62 sites, 52 recruiting

  • Albany Medical College

    Albany, New York, 12208

    Alicia Leader, 518-262-6682, downeya@amc.edu

    Era Hanspal

    Recruiting

  • University of Michigan

    Ann Arbor, Michigan, 48105

    Chris Graves, 734-764-0644, gravesch@med.umich.edu

    Noelle Carlozzi

    Recruiting

  • Emory University, Wesley Woods Health Center

    Atlanta, Georgia, 30329

    Elaine Sperin, 404-712-7044, esperin@emory.edu

    Stewart Factor

    Recruiting

  • Georgia Health Sciences University

    Augusta, Georgia, 30912

    Terminated

  • University of Maryland School of Medicine

    Baltimore, Maryland, 21201

    Withdrawn

  • Johns Hopkins University

    Baltimore, Maryland, 21287

    Etta Goldman, 410-614-9483, egoldm17@jhmi.edu

    Jee Bang

    Recruiting

  • University of Alabama

    Birmingham, Alabama, 35294

    Jenna Smith, 205-996-2807, jltidwell@uabmc.edu

    Victor Sung

    Recruiting

  • Boston University Medical Center

    Boston, Massachusetts, 02118

    Terminated

  • Beth Israel Deaconess Medical Center

    Boston, Massachusetts, 02215

    Sophia Antonioli, 617-667-2355, santoni1@bidmc.harvard.edu

    Samuel Frank

    Recruiting

  • University of Vermont

    Burlington, Vermont, 05401

    Jasmine Marsh, 802-847-1597, jasmine.marsh@uvmhealth.org

    James Boyd

    Recruiting

  • Cooper University Hospital

    Camden, New Jersey, 08103

    Active, not recruiting

  • University of Virginia

    Charlottesville, Virginia, 22908

    Lauren Miller, 434-982-6599, fdk5dn@virginia.edu

    Alex Dalrymple

    Recruiting

  • Northwestern University

    Chicago, Illinois, 60611

    Zsa Zsa Brown, 312-503-4121, zsazsa.brown@northwestern.edu

    Danny Bega

    Recruiting

  • University of Chicago

    Chicago, Illinois, 60637

    Terminated

  • Rush University Medical Center

    Chicago, Illinois, 68612

    Tyler Svymbersky, 312-563-0676, tyler_svymbersky@rush.edu

    Deborah A. Hall

    Recruiting

  • University of Cincinatti

    Cincinnati, Ohio, 42519

    Bobbie Stubbeman, 513-558-0142, stubbebl@ucmail.uc.edu

    Andrew Duker

    Recruiting

  • Cleveland Clinic

    Cleveland, Ohio, 44195

    Courtney Cannon, 216-445-5637, cannonc2@ccf.org

    Adam Margolius

    Recruiting

  • University of South Carolina

    Columbia, South Carolina, 29203

    Michael Parrish, 803-545-6103, michael.parrish@prismahealth.org

    Miroslav Cuturic

    Recruiting

  • The Ohio State University

    Columbus, Ohio, 43021

    Kaleigh Clevenger, 614-257-2784, kaleigh.clevenger@osumc.edu

    Sandra Kostyk

    Recruiting

  • Wayne State University

    Detroit, Michigan, 48201

    Withdrawn

  • Duke University

    Durham, North Carolina, 27705

    Michelle Moshkowitz, 919-664-0865, michelle.moshkowitz@duke.edu

    Burton Scott

    Recruiting

  • Cenexel Rocky Mountain Clinical Research, LLC

    Englewood, Colorado, 80113

    Liza Heap, 303-762-6674, e.heap@cenexel.com

    Rajeev Kumar

    Recruiting

  • Sanford Health

    Fargo, North Dakota, 58122

    Destini Spaeth, 701-234-2474, destini.spaeth@sanfordhealth.org

    Tanya Harlow

    Recruiting

  • University of Connecticut

    Farmington, Connecticut, 06032

    Robin Zingales-Browne, 860-679-4418, rbrowne@uchc.edu

    Shaikab Khan

    Recruiting

  • University of Florida Board of Trustees

    Gainesville, Florida, 32607

    Randy Foli, 352-733-2433, randy.foli@neurology.ufl.edu

    Nikolaus McFarland

    Recruiting

  • Virginia Commonwealth University Parkinson's and Movement Disorders Center

    Henrico, Virginia, 23298

    Kara McHaney, 804-628-1809, kara.mchaney@vcuhealth.org

    Stephanie Bissonnette

    Recruiting

  • Baylor College of Medicine

    Houston, Texas, 77030

    Clarissa Sanchez, 713-798-5120, clarissa.sanchez@bcm.edu

    Joseph Jankovic

    Recruiting

  • University of Texas Health Science Center

    Houston, Texas, 77030

    Brittany Duncan, 713-486-3134, brittany.j.duncan@uth.tmc.edu

    Erin Furr Stimming

    Recruiting

  • Indiana University

    Indianapolis, Indiana, 46202

    Courtney Gatza, 317-274-9657, cgatza@iupui.edu

    Christopher James

    Recruiting

  • University of Iowa

    Iowa City, Iowa, 52245

    Julie Koeppel, 319-353-4551, julie-koeppel@uiowa.edu

    Annie Killoran

    Recruiting

  • University of California - Irvine Medical Center

    Irvine, California, 92697

    Veronica Martin, 714-456-7760, vero@hs.uci.edu

    Anna Morenkova

    Recruiting

  • University of Kansas Medical Center

    Kansas City, Kansas, 66160

    Cameron Zoraghchi, 913-588-0667, czoraghchi2@kumc.edu

    Richard Dubinksy

    Recruiting

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

    Kirkland, Washington, 98034

    Anthony Sander, 425-899-5416, agsader@evergreenhealthcare.org

    Pinky Argarwal

    Recruiting

  • Cleveland Clinic - Las Vegas

    Las Vegas, Nevada, 89102

    Liliana Dumitrescu, 702-483-6016, dumitrl@ccf.org

    Zoltan Mari

    Recruiting

  • Loma Linda Medical Center

    Loma Linda, California, 92354

    Terminated

  • University of California - Los Angeles

    Los Angeles, California, 90095

    Aaron Fisher, 310-794-1225, adfisher@mednet.ucla.edu

    Susan Perlman

    Recruiting

  • University of Louisville

    Louisville, Kentucky, 40202

    Annette Robinson, 502-540-3585, annette.robinson@louisville.edu

    Victoria Holiday

    Recruiting

  • University of Wisconsin - Madison

    Madison, Wisconsin, 53705

    Kim Janko, 608-262-8027, janko@neurology.wisc.edu

    Kathleen Shannon, MD

    Recruiting

  • University of Tennessee Health Science Center

    Memphis, Tennessee, 38163

    Terminated

  • University of Miami

    Miami, Florida, 33431

    Wilfredo Rodriguez Somoza, 561-939-4169, wxr205@med.miami.edu

    Carlos Singer

    Recruiting

  • Hennepin County Medical Center

    Minneapolis, Minnesota, 55415

    Dawn Radtke, 612-873-2943, dawn.radtke@hcmed.org

    Martha Nance

    Recruiting

  • Vanderbilt University Medical Center

    Nashville, Tennessee, 37232

    Elizabeth Huitz, 615-936-1007, elizabeth.huitz@vumc.org

    Daniel Claassen

    Recruiting

  • Rutgers, the State University of New Jersey

    New Brunswick, New Jersey, 08901

    Sheila Redding, 732-235-7718, sr1238@rwjms.rutgers.edu

    Machteld Hillen

    Recruiting

  • Columbia University

    New York, New York, 10032

    Paula Wasserman, 212-305-4597, pl2032@cumc.columbia.edu

    Karen Marder

    Recruiting

  • University of Nebraska Medical Center

    Omaha, Nebraska, 68106

    Nick Miller, 402-552-6241, nicholas.miller@unmc.edu

    Amy Hellman

    Recruiting

  • University of Pennsylvania

    Philadelphia, Pennsylvania, 19107

    Jennifer Klapper, 215-829-5176, jennifer.klapper@pennmedicine.upenn.edu

    Aaron Lasker

    Recruiting

  • St. Joseph's Hospital and Medical Center

    Phoenix, Arizona, 85013

    Aleksander Gomez, 602-406-3719, aleksander.gomez@commonspirit.org

    Nicki Niemann

    Recruiting

  • University of Pittsburgh

    Pittsburgh, Pennsylvania, 15213

    Patricia Conlon, 412-692-2394, patricia.conlon@pitt.edu

    Valerie Suski

    Recruiting

  • Oregon Health and Science University

    Portland, Oregon, 97239

    Emily Leonard, 503-367-4719, leonarde@ohsu.edu

    Amie Hiller, MD

    Recruiting

  • Virginia Commonwealth University

    Richmond, Virginia, 23233

    Active, not recruiting

  • University of Rochester

    Rochester, New York, 14618

    Hannah Mesmer, 585-341-7500, hannah_mesmer@urmc.rochester.edu

    Frederick Marshall

    Recruiting

  • University of Illinois College of Medicine at Rockford

    Rockford, Illinois, 61107

    Terminated

  • University of California - Davis

    Sacramento, California, 95817

    Rajwant Singh, 916-734-6278, rajsin@ucdavis.edu

    Talia Hamm, (916) 734-3541, tghamm@ucdavis.edu

    Recruiting

  • University of Utah

    Salt Lake City, Utah, 84108

    Paola Wall, 801-581-4543, paola.wall@hsc.utah.edu

    Paolo Moretti

    Recruiting

  • University of California - San Diego

    San Diego, California, 92037

    Sean Patel, 858-249-0568, svp004@health.ucsd.edu

    Jody Corey-Bloom

    Recruiting

  • University of California - San Francisco

    San Francisco, California, 94158

    Zach Lamson, 415-502-0670, zach.lamson@ucsf.edu

    Michael Geschwind

    Recruiting

  • University of Washington Medical Center

    Seattle, Washington, 98195

    Amy Good, 206-543-5933, amygood@uw.edu

    Debra Castillo, 206-543-3647, debradel@uw.edu

    Recruiting

  • Washington University in St. Louis

    St Louis, Missouri, 63110

    Stacey Barton, 314-362-3471, bartons@neuro.wustl.edu

    Joel Perlmutter

    Recruiting

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

    Tampa, Florida, 33612

    Kelly Elliott, 813-974-6022, kelliot@usf.edu

    Juan Sanchez-Ramos

    Recruiting

  • Georgetown University

    Washington D.C., District of Columbia, 20007

    Erin Koppel, 202-687-1525, ek875@georgetown.edu

    Karen Anderson

    Recruiting

  • Hereditary Neurological Disease Center

    Wichita, Kansas, 67226

    Gregory Suter, 316-609-3020, hndcentre@aol.com

    William Mallonee

    Recruiting

  • Wake Forest School of Medicine

    Winston-Salem, North Carolina, 27157

    Summer Harris, 336-716-3919, sdharris@wakehealth.edu

    Jessica Tate

    Recruiting

Other trials in United States

United Kingdom30 sites, 26 recruiting

  • University of Aberdeen

    Aberdeen, AB25 2ZA

    Stella Sihlabela, +44 (0) 1224 550024, stella.sihlabela@nhs.scot

    Zosia Miedzybrodzka

    Recruiting

  • Birmingham and Solihull Mental Health NHS Foundation Trust

    Birmingham, B15 2FG

    Elsa Benn, +44 (0)121 3014337, e.benn@nhs.net

    Hugh Rickards

    Recruiting

  • North Bristol NHS Trust

    Bristol, UK, BS10 5NB

    Rebecca Pracownik, +44 (0)117 414 8194, rebecca.pracownik@nbt.nhs.uk

    Elizabeth Coulthard

    Recruiting

  • University of Cambridge

    Cambridge, CB2 0PY

    Amy Evans, +44 (0)122 376 1863, ahe28@cam.ac.uk

    Roger Barker

    Recruiting

  • Cardiff University

    Cardiff, CF24 4HQ

    Laura Mills, +44 (0)2920 687613, millslj@cardiff.ac.uk

    Anne Rosser

    Recruiting

  • Tayside Health Board

    Dundee, DD1 9SY

    Paula Mcfadyen, +44 (0) 1382 424172, paula.mcfadyen@nhs.net

    Jonathan Berg

    Recruiting

  • Lothian Health Board

    Edinburgh, EH4 2XU

    Maria Dewar, +44 (0) 1315 371116, maria.dewar@nhslothian.scot.nhs.uk

    Peter Foley

    Recruiting

  • Royal Devon and Exeter NHS Foundation Trust

    Exeter, Devon, EX25DW

    Evanna McEvoy, +44 (0)139 240 6979, evanna.mcevoy@nhs.net

    Timothy Harrower

    Recruiting

  • Greater Glasgow Health Board

    Glasgow, G51 4TF

    Helen Bannister, +44 (0)141 232 7600, helen.bannister@ggc.scot.nhs.uk

    Stuart Ritchie

    Recruiting

  • Ayrshire Central Hospital

    Kilmarnock, KA2 OBB

    Terminated

  • Fife Health Board

    Kirkcaldy, UK, KY1 2ND

    Nicola Johns, +44 (0) 1592 647993, nicola.johns@nhs.net

    Simon Rubidge

    Recruiting

  • NHS Forth Valley

    Larbert, FK5 4WR

    Terminated

  • Leeds Teaching Hospitals

    Leeds, LS7 4SA

    Callum Schofield, 0113 39 24679, callum.schofield@nhs.net

    Alison Kraus

    Recruiting

  • The Walton Centre

    Liverpool, L9 7LJ

    Andrea Clyne, +44 01515563720, andrea.clyne@thewaltoncentre.nhs.uk

    Rhys Davies

    Recruiting

  • Guy's and St. Thomas's NHS Foundation Trust

    London, SE1 9RT

    Elizabeth White, 02071887865, elizabeth.white@gstt.nhs.uk

    Thomasin Andrews

    Recruiting

  • St. George's Hospital

    London, SW17 0RE

    Hae-Ree Seo, +44 (0)208 725 1971, haeree.seo@stgeorges.nhs.uk

    Nayana Lahiri

    Recruiting

  • University College of London

    London, WC1B SEH

    Jessica Lowe, jessica.lowe@ucl.ac.uk

    Sarah Tabrizi

    Recruiting

  • Central Manchester University Hospitals NHS Foundation Trust

    Manchester, M13 9WL

    Helen Chadwick, 0161 701 2541, helen.chadwick@mft.nhs.uk

    David Craufurd

    Recruiting

  • Leicestershire Partnership

    Narborough, Leicestershire, LE19 4SL

    Iain Termie, iain.termie@leicspart.nhs.uk

    Reza Kiana

    Recruiting

  • Northumberland, Tyne & Wear NHS Foundation Trust of St. Nicholas Hospital

    Newcastle upon Tyne, NE3 3XT

    Sarah Edwards, +01 (0)912 467 392, sarah.edwards@ntw.nhs.uk

    Suresh Komati

    Recruiting

  • St. Andrews Healthcare

    Northampton, NN1 5DG

    Terminated

  • Oxford Radcliffe Hospitals

    Oxford, OX3 9DU

    Zara Skitt, +44 (0)1865 234309, zara.skitt@ouh.nhs.uk

    Andrea Nemeth

    Recruiting

  • Plymouth Hospitals NHS Trust

    Plymouth, PL6 8BX

    Charlotte Orr, +44 (0)1752 432845, charlotteorr@nhs.net

    Rupert Noad

    Recruiting

  • Poole Hospital

    Poole, BH15 2JB

    Annemieke Fox, 0300 019 3210, annemieke.fox@poole.nhs.uk

    John Burn

    Recruiting

  • Royal Berkshire NHS Foundation Trust

    Reading, RG1 5AN

    Zara Skitt, +44 (0)1865 234309, zara.skitt@ouh.nhs.uk

    Richard Armstrong

    Recruiting

  • Sheffield Children's NHS Foundation Trust

    Sheffield, S10 2TH

    Pauline Bayliss, 0114 2260828, pauline.bayliss@sch.nhs.uk

    Alisdair McNeill

    Recruiting

  • University Hospital Southampton

    Southampton, SO16 6YD

    Veena Agarwal, +44 (0)238 120 6132, veena.agarwal@uhs.nhs.uk

    Christopher Kipps

    Recruiting

  • North Staffordshire Combined Healthcare NHS Trust

    Stoke-on-Trent, ST4 8HH

    Karen Kennedy, 01782 652675, karen.kennedy@northstaffs.nhs.uk

    George El-Nimr

    Recruiting

  • Avon and Wiltshire Mental Health Partnership

    Swindon, SN3 6BW

    Active, not recruiting

  • Betsi Cadwaladr University Health Board

    Wrexham, UK, LL13 7TD

    Julia Roberts, +44 (0)1248 383091, julia.roberts@bangor.ac.uk

    Alberto Salmoiraghi

    Recruiting

Other trials in United Kingdom

Germany14 sites, 13 recruiting

  • University Hospital Aachen

    Aachen, 52074

    Rena Overbeck, +49 (0)241 803 7705, ronneken@ukaachen.de

    Kathrin Reetz

    Recruiting

  • University of Berlin

    Berlin, 10117

    Stefanie Kehrer, 49(0)30450-617-276, stefanie.kehrer@charite.de

    Josef Priller

    Recruiting

  • St. Josef und St. Elisabeth Hospital

    Bochum, 44791

    Barbara Kaminski, +49 (0)234 509 2703, b.kaminski@klinikum-bochum.de

    Carsten Saft

    Recruiting

  • University Hospital Carl Gustav Carus Dresden

    Dresden, 1307

    Simone Kögler, 0049 351 4582524, simone.koegler@uniklinikum-dresden.de

    Björn Falkenburger

    Recruiting

  • University Hospital Erlangen

    Erlangen, 91054

    Susanne Seifert, 0049 91318544751, susanne.seifert@uk-erlangen.de

    Jürgen Winkler

    Recruiting

  • University Medical Center Freiburg

    Freiburg im Breisgau, 79106

    Gerit Kammel, +49 761 270 54750, gerit.kammel@uniklinik-freiburg.de

    Michel Rijntjes

    Recruiting

  • Paracelsus Elena Klinik Kassel

    Kassel, 34128

    Grit Langhans, 0049 561 6009 - 169, grit.langhans@paracelsus-kliniken.de

    Claudia Trenkwalder

    Recruiting

  • University Hospital Schleswig-Holstein

    Lübeck, 23538

    Jenny Schmalfeld, +49 451 3101 8214, jenny.schmalfeld@neuro.uni-luebeck.de

    Alexander Münchau

    Recruiting

  • University Hospital Giessen and Marburg

    Marburg, 25043

    Terminated

  • Technical University of Munich

    Munich, 81675

    Antje Lüsebrink, +49 89 4140 4693, antje.luesebrink@tum.de

    Adolf Weindl

    Recruiting

  • George-Huntington-Institut GmbH

    Münster, 48149

    Anja Kletsch, +49 251 7887880, anja.kletsch@ghi-muenster.de

    Ralf Reilmann

    Recruiting

  • kbo-Isar-Amper-Klinikum Taufkirchen (Vils)

    Taufkirchen, 84416

    Michael Bachmaier, +49 (0)808 493 4417, michael.bachmaier@kbo.de

    Alzbeta Mühlbäck

    Recruiting

  • University Hopsital of Ulm

    Ulm, 89081

    Hela Jerbi, +49 731 50063080, ambulanz-ulm@euro-hd.net

    Bernhard Landwehrmeyer

    Recruiting

  • University Hospital of Wuerzburg

    Würzburg, 97080

    Christine Leypold, +49 931 201 23510, leypold_c@ukw.de

    Thorsten Odorfer

    Recruiting

Other trials in Germany

Spain12 sites, 12 recruiting

  • Hospital Infanta Cristina, Badajoz

    Badajoz, 06080

    Patrocinio García Moreno, +34 (0)637 566 300, patrocinio.garciam@externos.salud-juntaex.es

    Carmen Durán Herrera

    Recruiting

  • Hospital de Cruces

    Barakaldo, 08036

    Maria Angeles Acera Gill, +34 (0)946 006 363, m.angeles.aceragil@osakidetza.net

    Juan Carlos Gómez Esteban

    Recruiting

  • Hospital de la Santa Creu i Sant Pau

    Barcelona, 08025

    Andrea Horta, +34 (0)935 567 253, ahorta@santpau.cat

    Jaime Kulisevsky

    Recruiting

  • Hospital Mare de Déu de la Mercè

    Barcelona, 08035

    Patricia Vaquero Casado, 0034934185826, pvaqueroc.merced@hospitalarias.es

    Jesus Ruíz Idiago

    Recruiting

  • Fundacion Clinic per a La Recerca Biomèdica

    Barcelona, 08036

    Pilar Santacruz, +34 (0)932 275 4003 088, psanta@clinic.cat

    Esteban Muñoz

    Recruiting

  • Hospital Universitari de Bellvitge

    Barcelona, 08907

    Serge Jaumà Classen, 34 93 335 70 11

    Matilde Calopa Garriga

    Recruiting

  • Hospital Universitario de Burgos

    Burgos, 09006

    Natividad Mariscal, +34 (0)947 256 533, namariscal@saludcastillayleon.es

    Esther Cubo

    Recruiting

  • Hospital Universitario Ramón y Cajal

    Madrid, 28034

    Monica Aguilar, monicaaguilar.hrc@gmail.com

    José Luis López-Sendón Moreno

    Recruiting

  • Fundación Jiménez Díaz

    Madrid, 28040

    Noelia Rodríguez Martínez, +34 (0)689 463 417, noe-rodriguez@hotmail.com

    María Teresa Montojo

    Recruiting

  • Hospital Son Espases

    Palma de Mallorca, 07120

    Mónica Rodríguez, +34 (0)658 886 467, psicologa.huntington@gmail.com

    Ines Legarda

    Recruiting

  • Complejo Hospitalario de Navarra

    Pamplona, 31008

    Ana Carmona Rueda, +34 (0)848 429 990, anacarmonarueda@gmail.com

    María Ramos

    Recruiting

  • Fundacion Hospital Universitario La Fe

    Valencia, 46970

    Francisco Casterá Brugada, +34 (0)645 134 892, franciscocasteraenroll@gmail.com

    Carmen Peiró

    Recruiting

Other trials in Spain

France11 sites, 11 recruiting

  • CHU Amiens-Picardie

    Amiens, 80054

    Stéphanie Blin, +33(0)3 22 66 80 00 ext. 63206, blin.stephanie@chu-amiens.fr

    Pierre Krystkowiak

    Recruiting

  • CHU Angers, Centre de Référence Maladies Neurogénétiques

    Angers, 49100

    Audrey Olivier, +33 (0)241 355 615, AuOlivier@chu-angers.fr

    Christophe Verny

    Recruiting

  • Bordeaux - Huntington Disease competencies center

    Bordeaux, 33076

    Marie-Pierre Baudier, +33 (0)149 814 301, marie-pierre.baudier@chu-bordeaux.fr

    Cyril Goizet

    Recruiting

  • CHU Gabriel-Montpied

    Clermont-Ferrand, 63003

    Dihya Benghadid, +33 (0)473 754 067, dbenghadid@chu-clermontferrand.fr

    Ana Marques

    Recruiting

  • Hôpital Henri Mondor, Centre d'Investigation Clinique

    Créteil, 94000

    Graça Morgado, +33 (0)149 814 301, graca.morgado@aphp.fr

    Anne-Catherine Bachoud-Levi

    Recruiting

  • Lille-Amiens - Huntington Disease Constituent site

    Lille, 59037

    Eric Decorte, +33 (0)3.20.44.59.62 ext. 30583, eric.decorte@chru-lille.fr

    Mélissa Tir

    Recruiting

  • Hôpital La Timone

    Marseille, 13005

    Laura Mundler, +33 (0)491 384 872, laura.mundler@ap-hm.fr

    Jean-Philippe Azulay

    Recruiting

  • CHU Montpellier

    Montpellier, 34295

    Diana Ban, +33 (0)777 308 857, d-ban@chu-montpellier.fr

    Cecilia Marelli

    Recruiting

  • Institut du Cerveau et de la Moelle Epinière

    Paris, 75646

    Hortense Hurmic, +33 (0)157 274 222, hortense.hurmic@icm-institute.org

    Alexandra Durr

    Recruiting

  • Hôpitaux Universitaires de Strasbourg Hôpital de Hautepierre-Service de Neurologie

    Strasbourg, Alsace Lorraine, 67098

    Fanny Huselstein, +33 (0)388 128 642, fanny.huselstein@chru-strasbourg.fr

    Christine Tranchant

    Recruiting

  • Hôpital Purpan, Centre d'Investigation Clinique

    Toulouse, 31059

    Brigitte Pouzet, +33 (0)561 779 125, brigitte.pouzet@inserm.fr

    Fabienne Calvas

    Recruiting

Other trials in France

Canada9 sites, 7 recruiting

  • University of Calgary, Movement Disorders Program

    Calgary, Alberta, T2N 4N1

    Lorelei Tainsh, (403) 210-9873, derwent@ucalgary.ca

    Justyna Sarna

    Recruiting

  • University of Alberta (Glenrose)

    Edmonton, Alberta, T5G 0B7

    Terminated

  • University of Alberta Hospital in Edmonton

    Edmonton, Alberta, T6G 2B7

    Vanessa Larida, 780-248-1157, larida@ualberta.ca

    Oksana Suchowersky

    Recruiting

  • Nova Scotia Health Authority

    Halifax, Nova Scotia, B3H 3A7

    Patrick Bethune, 902-431-8783, patrick.bethune@centricityresearch.com

    Kerrie Schoffer

    Recruiting

  • Centre for Movement Disorders

    Markham, Ontario, L6B 1C9

    Terminated

  • CHUM Hospital of Notre Dame

    Montreal, Quebec, H2L 4M1

    Lyne Jean, 514.890.8000 ext. 26470, lyne.jean.chum@ssss.gouv.qc.ca

    Sylvain Chouinard

    Recruiting

  • The Ottawa Hospital

    Ottawa, Ontario, K1Y 4E9

    Jane Ding, (613) 798-5555, jading@toh.ca

    Tiago Mestre

    Recruiting

  • North York General Hospital

    Toronto, Ontario, M2K 1E2

    Clare Gibbons, 416 756 6788, clare.gibbons@nygh.on.ca

    Alan Fung

    Recruiting

  • University of British Columbia

    Vancouver, British Columbia, V6T 2B5

    Mike Adurogbangba, 604-822-4872, madurogbangba@cmmt.ubc.ca

    Lynn Raymond

    Recruiting

Other trials in Canada

Italy9 sites, 8 recruiting

  • Bari Policlinico General Hospital

    Bari, 70124

    Vittorio Sciruicchio, +39 3391032862, vsciru@tin.it

    Marina de Tommaso

    Recruiting

  • IRCCS Istituto delle Scienze Neurologiche di Bologna

    Bologna, 40139

    Cesa Scaglione, +39 0514966919, cesa.scaglione@unibo.it

    Pietro Cortelli

    Recruiting

  • Università degli Studi di Genova (DINOGMI)

    Genoa, 16132

    Roberta Marchese, +39 0103538968, rmarchese@neurologia.unige.it

    Paola Mandich

    Recruiting

  • Fondazione IRCCS Istituto Neurologico Carlo Besta - Genetics

    Milan, MI, 20133

    Lorenzo Nanetti, 0039 02 23942519, lorenzo.nanetti@istituto-besta.it

    Caterina Mariotti

    Recruiting

  • Fondazione IRCCS Istituto Neurologico Carlo Besta - Neurology

    Milan, 20133

    Terminated

  • University of Naples

    Naples, I-80131

    Elena Salvatore, +39 3356096228, e.salvatore@unina.it

    Giuseppe De Michele

    Recruiting

  • Università Cattolica del Sacro Cuore

    Rome, 00168

    Flavia Torlizzi, +39 338.8069142, flavia.torlizzi@policlinicogemelli.it

    Anna Rita Bentivoglio

    Recruiting

  • Lega Italiana Ricerca Huntington (LIRH)

    Rome, 00185

    Barbara D'Alessio, +39 3272870465, barbara.dalessio@lirh.it

    Ferdinando Squitieri

    Recruiting

  • Azienda Ospedaliera Sant'Andrea

    Rome, 00189

    Silvia Romano, +39 0633776044, silvia.romano@uniroma1.it

    Giovanni Ristori

    Recruiting

Other trials in Italy

Poland6 sites, 4 recruiting

  • Copernicus Podmiotem Leczniczym sp. z o.o.

    Gdansk, 80-462

    Ewa Narożańska, +48 (0)512 384 610, gdansk.ewa1@gmail.com

    Witold Soltan

    Recruiting

  • Krakowska Akademia Neurologii Sp. z o.o

    Katowice, 40-588

    Agnieszka Prymus, +48 (0)505 723 735, agnieszkamarcin@o2.pl

    Monika Rudzińska-Bar

    Recruiting

  • Krakow - Krakowska Akademia Neurologii

    Krakow, 31-505

    Marta Pinkosz, 48,663,506,020, marta.pinkosz@neurologia.org.pl

    Monika Rudzińska-Bar

    Recruiting

  • Solumed Centrum Medyczne

    Poznan, 60-529

    Terminated

  • Medical University of Warsaw

    Warsaw, 02-097

    Terminated

  • Institute of Psychiatry and Neurology, Warsaw

    Warsaw, 02-957

    Karolina Ziora-Jakutowicz, +48 (0)690 831 022, jakutowicz@ipin.edu.pl

    Grzegorz Witkowski

    Recruiting

Other trials in Poland

Portugal5 sites, 4 recruiting

  • Hospital Prof Doutor Fernando Fonseca

    Amadora, 2720-276

    Helena Cardoso, +351 214348269, helenamcard26@gmail.com

    Cristina Costa, MD

    Recruiting

  • Hospital Universitário de Coimbra

    Coimbra, 3000-075

    Cristina Januário, +351 239 400 400

    Cristina Januário

    Not yet recruiting

  • Central Lisbon Hospital

    Lisbon, 1169-050

    Terminated

  • Hospital de Santa Maria / Instituto de Medicina Molecular

    Lisbon, 1649-035

    Tânia Silva, 00 351 217930629, cicneuro.lisbon@gmail.com

    Leonor Correia Guedes

    Recruiting

  • Hospital Universitário de São João

    Porto, 4200-319

    Ana Oliveira, +351 225 512 100 ext. 5119

    Leonor C Guedes

    Not yet recruiting

Other trials in Portugal

Australia4 sites, 4 recruiting

  • Monash University

    Melbourne, Victoria, 3800

    Emma Windebank, +61 03 9834 9430, emma.windebank@calvarycare.org.au

    Ruth Krasniqi, +61 3 9595 3288, ruth.krasniqi@calvarycare.org.au

    Recruiting

  • University of Melbourne, Royal Melbourne Hospital

    Parkville, 3052

    Joanna Neath, 613 8387 2483, joanna.neath@mh.org.au

    Anita Goh

    Recruiting

  • The Neurosciences Unit - North Metropolitan Hospital

    Perth, Western Australia, 6010

    Melanie Clark, 00643 3786078, melanie.clark@health.wa.gov.au

    Brian Long

    Recruiting

  • Westmead Hospital

    Westmead, New South Wales, 2145

    Therese Alting, +02 (0)984 563 10, therese.alting@health.nsw.gov.au

    Clement Loy

    Recruiting

Other trials in Australia

Belgium4 sites, 4 recruiting

  • Bruxelles - Erasme

    Brussels, 1070

    Nick Alaerts, +32 (0)255 558 74, nick.alaerts@erasme.ulb.ac.be

    Frédéric Supiot

    Recruiting

  • Institut de Pathologie et de Génétique (IPG)

    Charleroi, B-6041

    Cécile Minet, +32 (0)714 471 30, cecile.minet@ipg.be

    Christine Verellen-Dumoulin

    Recruiting

  • University Hospitals Leuven

    Leuven, Vlaams-Brabant, 3000

    Ann-Julie Trippas, +32 16 34 64 51, ann-julie.trippas@uzleuven.be

    Wim Vandenberghe

    Recruiting

  • Hôpital du Beau Vallon ASBL

    Saint-Servais, B-5002

    Jean-Marie Warzee, +32 (0)817 212 41, jm.warzee@beauvallon.be

    Lamia Guettat

    Recruiting

Other trials in Belgium

Denmark3 sites, 3 recruiting

  • University Hospital of Aarhus

    Aarhus, 8000

    Charlotte Germann Odgaard, +4521745502, charodga@rm.dk

    Anette Torvin Møller

    Recruiting

  • University Hospital of Copenhagen

    Copenhagen, DK2100

    Christina Vangsted Hansen, +4535458293, christina.vangsted.hansen@regionh.dk

    Lena E Hjermind

    Recruiting

  • University Hospital of Odense

    Odense, 5000

    Stinne Veilstrup Krøigård, +4524671929, stinne.veilstrup@rsyd.dk

    Morten Blaabjerg

    Recruiting

Other trials in Denmark

Netherlands3 sites, 3 recruiting

  • University Medical Center Groningen

    Groningen, 9700RB

    Maraike Coenen, +31 503619727, m.a.coenen@umcg.nl

    H.P.H. Kremer

    Recruiting

  • Leiden University Medical Centre

    Leiden, 2300 RC

    Esther Arendts, 31715261218, e.c.arendts@lumc.nl

    Susanne de Bot

    Recruiting

  • Clinical Trial Center Maastricht B.V.

    Maastricht, 6202 AZ

    Daisy Ramakers, +31(0)43-3877676, daisy.ramakers@mumc.nl

    Mayke Oosterloo

    Recruiting

Other trials in Netherlands

New Zealand3 sites, 3 recruiting

  • Auckland City Hospital

    Auckland, 1142

    Christina Buchanan, 093074949 ext. 25747, cbuchanan@adhb.govt.nz

    Richard Roxburgh

    Recruiting

  • New Zealand Brain Research Institute at University of Otago

    Christchurch, 8011

    Laura Paermentier, +64 03 364 0825 ext. 80825, laura.paermentier@cdhb.health.nz

    Tim Anderson

    Recruiting

  • Wellington Hospital

    Wellington, 6021

    Grace Hodgson, +64 4 806 0078, Grace.Hodgson@ccdhb.org.nz

    David Bourke

    Recruiting

Other trials in New Zealand

Colombia2 sites, 2 recruiting

  • Servicios Médicos MS, Clínica de Marly

    Bogotá, Cundinamarca, 110231

    Natalia Velez, (+573) 153 611090, nvelezmd@gmail.com

    Gabriel Jose Arango Uribe

    Recruiting

  • Universidad de Antioquia, Grupo de Neurociencias

    Medellín, Antioquia, 51922

    Sonia Moreno, (+574) 219 6424, sonia.moreno@gna.org.co

    Francisco Lopera

    Recruiting

Other trials in Colombia

Switzerland2 sites, 2 recruiting

  • Siloah AG

    Gümligen, 3073

    Jessica Köhli, 0041 31 352 20 70, jessica.koehli@siloah.ch

    Jean-Marc Burgunder

    Recruiting

  • University Hospital Zurich

    Zurich, 08091

    Maike Heider, +41 44 255 55 20, maike.heider@usz.ch

    Hans Jung

    Recruiting

Other trials in Switzerland

Argentina1 site, 1 recruiting

  • Instituto de Neurociencias Buenos Aires (INEBA)

    Buenos Aires

    Maria Lucrecia Pavon, +(54) 9 11 6008 9846, mpavon@ineba.net

    L

    Recruiting

Other trials in Argentina

Austria1 site, 1 recruiting

  • Universitatsklinik Innsbruck

    Innsbruck, 6020

    Anja Weber, +43 512-504-83716, anja.weber@tirol-kliniken.at

    Klaus Seppi

    Recruiting

Other trials in Austria

Chile1 site, 1 recruiting

  • CETRAM

    Santiago

    Natalia Rojas, +(569) 73997271, nrojas@cetram.org

    Pedro Chana

    Recruiting

Other trials in Chile

Ireland1 site, 1 recruiting

  • Beaumont Hospital

    Dublin, Republic of Ireland

    Mairead Fallon, +00 (0)353 018 0920 ext. 18, maireadfallon@beaumont.ie

    Niall Pender

    Recruiting

Other trials in Ireland

About this study

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 the 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 more than 150 active clinical sites in 23 countries, Enroll-HD is now the largest HD database available and is accessible to any interested researcher - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.

Keywords
Huntington's Disease, Huntington Disease, Juvenile Huntington's Disease, Registry, Cohort, CHDI
Medical subject headings
Huntington Disease

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Motor Assessments: Unified Huntington's Disease Rating Scale (UHDRS) 99 Motor, UHDRS '99 Diagnostic Confidence Level

    The motor section of the UHDRS assesses motor features of HD with standardized ratings of oculomotor function, dysarthria, chorea, dystonia, gait, and postural stability. UHDRS 99 Motor, UHDRS Diagnostic Confidence Level.

    Measured: through study completion, an average of 1 year

  2. Functional Assessments: UHDRS '99 Total Functional Capacity, UHDRS '99 Functional Assessment Scale, UHDRS '99 Independence Scale

    The Total Functional Capacity, Functional Assessment and Independence Subscales of the UHDRS '99 will be used to assess participants' functional status. The Total Functional Capacity scale has established psychometric properties including inter-rater reliability and validity, based on radiographic measures of disease progression.

    Measured: through study completion, an average of 1 year

  3. Problem Behaviors Assessment-Short (PBA-s)

    The Problem Behavioral Assessment Short Version (PBA-s) will be used to perform behavioral assessments. This instrument measures frequency and severity of symptoms related to altered affect, thought content and coping styles.

    Measured: through study completion, an average of 1 year

  4. Cognitive Assessments: Symbol Digit Modality Test; Stroop Color Naming; Stroop Word Reading; Categorical Verbal Fluency

    Cognition will be assessed using the Categorical Verbal Fluency Test, Symbol Digit Modality Test and Stroop Color and Word Reading Test. Verbal fluency is a commonly used neuropsychological test which examines the ability to spontaneously produce words orally within a fixed time span. For category fluency, words must be produced according to semantic constraints. The measure of performance used will be the number of correctly generated words within 60 seconds.

    Measured: through study completion, an average of 1 year

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted10 Apr 2012 (estimated)
  2. Study startJul 2012
  3. Primary completionJan 2062 (estimated)
  4. Study completionJan 2062 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Observational
Observational model
Other
Time perspective
Prospective
Enrolment
35,000 participants (estimated)
Target duration
1 Year
IDs, dates and publications
ClinicalTrials.gov ID
NCT01574053
Sponsor's protocol ID
Enroll -HD
Status last verified
Feb 2024
First submitted
6 Apr 2012
Last updated
28 Feb 2024
Results posted
No
Data monitoring committee
Yes

Publications

  • Gray SM, Dai J, Smith AC, Beckley JT, Rahmati N, Lewis MC, Quirk MC. Changes in 24(S)-Hydroxycholesterol Are Associated with Cognitive Performance in Early Huntington's Disease: Data from the TRACK and ENROLL HD Cohorts. J Huntingtons Dis. 2024 Nov;13(4):449-465. doi: 10.3233/JHD-240030.

    PubMed 39269850

  • Langbehn DR, Sathe SS, Loy C, Sampaio C, Mccusker EA. A Phenotypic Atlas for Huntington Disease Based on Data From the Enroll-HD Cohort Study. Neurol Genet. 2023 Nov 28;9(6):e200111. doi: 10.1212/NXG.0000000000200111. eCollection 2023 Dec.

    PubMed 38035176

  • Landwehrmeyer GB, Fitzer-Attas CJ, Giuliano JD, Goncalves N, Anderson KE, Cardoso F, Ferreira JJ, Mestre TA, Stout JC, Sampaio C. Data Analytics from Enroll-HD, a Global Clinical Research Platform for Huntington's Disease. Mov Disord Clin Pract. 2016 Jun 22;4(2):212-224. doi: 10.1002/mdc3.12388. eCollection 2017 Mar-Apr.

    PubMed 30363395

Questions about this trial

What is this clinical trial studying?

An observational study of Huntington's Disease, run by CHDI Foundation, Inc. at 183 sites in 20 countries.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 10 inclusion and 4 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 28 Feb 2024. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 183 sites in United States, United Kingdom, Germany, Spain, France and 15 more countries. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Noopur Modi (Info@Enroll-HD.org), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Motor Assessments: Unified Huntington's Disease Rating Scale (UHDRS) 99 Motor, UHDRS '99 Diagnostic Confidence Level (time frame: through study completion, an average of 1 year). The study lists 4 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT01574053, which also lists 3 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 28 Feb 2024.

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