Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
February 26, 2024 updated by: CHDI Foundation, Inc.
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.
Study Overview
Status
Recruiting
Conditions
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.
Study Type
Observational
Enrollment (Estimated)
35000
Contacts and Locations
This section provides the contact details for those conducting the study, and information on where this study is being conducted.
Study Contact
- Name: Noopur Modi
- Email: Info@Enroll-HD.org
Study Locations
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Buenos Aires, Argentina
- Recruiting
- Instituto de Neurociencias Buenos Aires (INEBA)
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Contact:
- Maria Lucrecia Pavon
- Phone Number: +(54) 9 11 6008 9846
- Email: mpavon@ineba.net
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Principal Investigator:
- Emilia Gatto
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Contact:
- L
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Parkville, Australia, 3052
- Recruiting
- University of Melbourne, Royal Melbourne Hospital
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Contact:
- Joanna Neath
- Phone Number: 613 8387 2483
- Email: joanna.neath@mh.org.au
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Principal Investigator:
- Anita Goh
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New South Wales
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Westmead, New South Wales, Australia, 2145
- Recruiting
- Westmead Hospital
-
Principal Investigator:
- Clement Loy
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Contact:
- Therese Alting
- Phone Number: +02 (0)984 563 10
- Email: therese.alting@health.nsw.gov.au
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Victoria
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Melbourne, Victoria, Australia, 3800
- Recruiting
- Monash University
-
Principal Investigator:
- Julie Stout
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Contact:
- Ruth Krasniqi
- Phone Number: +61 3 9595 3288
- Email: ruth.krasniqi@calvarycare.org.au
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Contact:
- Emma Windebank
- Phone Number: +61 03 9834 9430
- Email: emma.windebank@calvarycare.org.au
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Western Australia
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Perth, Western Australia, Australia, 6010
- Recruiting
- The Neurosciences Unit - North Metropolitan Hospital
-
Contact:
- Melanie Clark
- Phone Number: 00643 3786078
- Email: melanie.clark@health.wa.gov.au
-
Principal Investigator:
- Brian Long
-
Principal Investigator:
- Carrolyn Orr
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Innsbruck, Austria, 6020
- Recruiting
- Universitatsklinik Innsbruck
-
Contact:
- Anja Weber
- Phone Number: +43 512-504-83716
- Email: anja.weber@tirol-kliniken.at
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Principal Investigator:
- Klaus Seppi
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Bruxelles, Belgium, 1070
- Recruiting
- Bruxelles - Erasme
-
Contact:
- Nick Alaerts
- Phone Number: +32 (0)255 558 74
- Email: nick.alaerts@erasme.ulb.ac.be
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Principal Investigator:
- Frédéric Supiot
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Charleroi, Belgium, B-6041
- Recruiting
- Institut de Pathologie et de Génétique (IPG)
-
Contact:
- Cécile Minet
- Phone Number: +32 (0)714 471 30
- Email: cecile.minet@ipg.be
-
Principal Investigator:
- Christine Verellen-Dumoulin
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Saint-Servais, Belgium, B-5002
- Recruiting
- Hôpital du Beau Vallon ASBL
-
Contact:
- Jean-Marie Warzee
- Phone Number: +32 (0)817 212 41
- Email: jm.warzee@beauvallon.be
-
Principal Investigator:
- Lamia Guettat
-
-
Vlaams-Brabant
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Leuven, Vlaams-Brabant, Belgium, 3000
- Recruiting
- University Hospitals Leuven
-
Contact:
- Ann-Julie Trippas
- Phone Number: +32 16 34 64 51
- Email: ann-julie.trippas@uzleuven.be
-
Principal Investigator:
- Wim Vandenberghe
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-
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Alberta
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Calgary, Alberta, Canada, T2N 4N1
- Recruiting
- University of Calgary, Movement Disorders Program
-
Principal Investigator:
- Justyna Sarna
-
Contact:
- Lorelei Tainsh
- Phone Number: (403) 210-9873
- Email: derwent@ucalgary.ca
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Edmonton, Alberta, Canada, T5G 0B7
- Terminated
- University of Alberta (Glenrose)
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Edmonton, Alberta, Canada, T6G 2B7
- Recruiting
- University of Alberta Hospital in Edmonton
-
Contact:
- Vanessa Larida
- Phone Number: 780-248-1157
- Email: larida@ualberta.ca
-
Principal Investigator:
- Oksana Suchowersky
-
-
British Columbia
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Vancouver, British Columbia, Canada, V6T 2B5
- Recruiting
- University of British Columbia
-
Contact:
- Mike Adurogbangba
- Phone Number: 604-822-4872
- Email: madurogbangba@cmmt.ubc.ca
-
Principal Investigator:
- Lynn Raymond
-
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Nova Scotia
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Halifax, Nova Scotia, Canada, B3H 3A7
- Recruiting
- Nova Scotia Health Authority
-
Principal Investigator:
- Kerrie Schoffer
-
Contact:
- Patrick Bethune
- Phone Number: 902-431-8783
- Email: patrick.bethune@centricityresearch.com
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Ontario
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Markham, Ontario, Canada, L6B 1C9
- Terminated
- Centre for Movement Disorders
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Ottawa, Ontario, Canada, K1Y 4E9
- Recruiting
- The Ottawa Hospital
-
Contact:
- Jane Ding
- Phone Number: (613) 798-5555
- Email: jading@toh.ca
-
Principal Investigator:
- Tiago Mestre
-
Toronto, Ontario, Canada, M2K 1E2
- Recruiting
- North York General Hospital
-
Contact:
- Clare Gibbons
- Phone Number: 416 756 6788
- Email: clare.gibbons@nygh.on.ca
-
Principal Investigator:
- Alan Fung
-
-
Quebec
-
Montreal, Quebec, Canada, H2L 4M1
- Recruiting
- CHUM Hospital of Notre Dame
-
Contact:
- Lyne Jean
- Phone Number: 26470 514.890.8000
- Email: lyne.jean.chum@ssss.gouv.qc.ca
-
Principal Investigator:
- Sylvain Chouinard
-
-
-
-
-
Santiago, Chile
- Recruiting
- CETRAM
-
Contact:
- Natalia Rojas
- Phone Number: +(569) 73997271
- Email: nrojas@cetram.org
-
Principal Investigator:
- Pedro Chana
-
-
-
-
Antioquia
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Medellín, Antioquia, Colombia, 51922
- Recruiting
- Universidad de Antioquia, Grupo de Neurociencias
-
Contact:
- Sonia Moreno
- Phone Number: (+574) 219 6424
- Email: sonia.moreno@gna.org.co
-
Principal Investigator:
- Francisco Lopera
-
-
Cundinamarca
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Bogotá, Cundinamarca, Colombia, 110231
- Recruiting
- Servicios Médicos MS, Clínica de Marly
-
Contact:
- Natalia Velez
- Phone Number: (+573) 153 611090
- Email: nvelezmd@gmail.com
-
Principal Investigator:
- Gabriel Jose Arango Uribe
-
Principal Investigator:
- William Fernandez
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-
-
-
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Aarhus, Denmark, 8000
- Recruiting
- University Hospital of Aarhus
-
Contact:
- Charlotte Germann Odgaard
- Phone Number: +4521745502
- Email: charodga@rm.dk
-
Principal Investigator:
- Anette Torvin Møller
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Copenhagen, Denmark, DK2100
- Recruiting
- University Hospital of Copenhagen
-
Contact:
- Christina Vangsted Hansen
- Phone Number: +4535458293
- Email: christina.vangsted.hansen@regionh.dk
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Principal Investigator:
- Lena E Hjermind
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Odense, Denmark, 5000
- Recruiting
- University Hospital of Odense
-
Contact:
- Stinne Veilstrup Krøigård
- Phone Number: +4524671929
- Email: stinne.veilstrup@rsyd.dk
-
Principal Investigator:
- Morten Blaabjerg
-
-
-
-
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Amiens, France, 80054
- Recruiting
- CHU Amiens-Picardie
-
Contact:
- Stéphanie Blin
- Phone Number: 63206 +33(0)3 22 66 80 00
- Email: blin.stephanie@chu-amiens.fr
-
Principal Investigator:
- Pierre Krystkowiak
-
Angers, France, 49100
- Recruiting
- CHU Angers, Centre de Référence Maladies Neurogénétiques
-
Principal Investigator:
- Christophe Verny
-
Contact:
- Audrey Olivier
- Phone Number: +33 (0)241 355 615
- Email: AuOlivier@chu-angers.fr
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Bordeaux, France, 33076
- Recruiting
- Bordeaux - Huntington Disease competencies center
-
Contact:
- Marie-Pierre Baudier
- Phone Number: +33 (0)149 814 301
- Email: marie-pierre.baudier@chu-bordeaux.fr
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Principal Investigator:
- Cyril Goizet
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Clermont-Ferrand, France, 63003
- Recruiting
- CHU Gabriel-Montpied
-
Contact:
- Dihya Benghadid
- Phone Number: +33 (0)473 754 067
- Email: dbenghadid@chu-clermontferrand.fr
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Principal Investigator:
- Ana Marques
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Créteil, France, 94000
- Recruiting
- Hôpital Henri Mondor, Centre d'Investigation Clinique
-
Contact:
- Graça Morgado
- Phone Number: +33 (0)149 814 301
- Email: graca.morgado@aphp.fr
-
Principal Investigator:
- Anne-Catherine Bachoud-Levi
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LILLE Cedex, France, 59037
- Recruiting
- Lille-Amiens - Huntington Disease Constituent site
-
Contact:
- Eric Decorte
- Phone Number: 30583 +33 (0)3.20.44.59.62
- Email: eric.decorte@chru-lille.fr
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Principal Investigator:
- Mélissa Tir
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Marseille, France, 13005
- Recruiting
- Hôpital la Timone
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Principal Investigator:
- Jean-Philippe Azulay
-
Contact:
- Laura Mundler
- Phone Number: +33 (0)491 384 872
- Email: laura.mundler@ap-hm.fr
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Montpellier, France, 34295
- Recruiting
- CHU Montpellier
-
Contact:
- Diana Ban
- Phone Number: +33 (0)777 308 857
- Email: d-ban@chu-montpellier.fr
-
Principal Investigator:
- Cécilia MARELLI
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Paris, France, 75646
- Recruiting
- Institut du Cerveau et de la Moelle Epinière
-
Principal Investigator:
- Alexandra Durr
-
Contact:
- Hortense Hurmic
- Phone Number: +33 (0)157 274 222
- Email: hortense.hurmic@icm-institute.org
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Toulouse, France, 31059
- Recruiting
- Hôpital Purpan, Centre d'Investigation Clinique
-
Contact:
- Brigitte Pouzet
- Phone Number: +33 (0)561 779 125
- Email: brigitte.pouzet@inserm.fr
-
Principal Investigator:
- Fabienne Calvas
-
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Alsace Lorraine
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Strasbourg, Alsace Lorraine, France, 67098
- Recruiting
- Hôpitaux Universitaires de Strasbourg Hôpital de Hautepierre-Service de Neurologie
-
Contact:
- Fanny Huselstein
- Phone Number: +33 (0)388 128 642
- Email: fanny.huselstein@chru-strasbourg.fr
-
Principal Investigator:
- Christine TRANCHANT
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-
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Aachen, Germany, 52074
- Recruiting
- University Hospital Aachen
-
Contact:
- Rena Overbeck
- Phone Number: +49 (0)241 803 7705
- Email: ronneken@ukaachen.de
-
Principal Investigator:
- Kathrin Reetz
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Berlin, Germany, 10117
- Recruiting
- University of Berlin
-
Contact:
- Stefanie Kehrer
- Phone Number: 49(0)30450-617-276
- Email: stefanie.kehrer@charite.de
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Principal Investigator:
- Josef Priller
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Bochum, Germany, 44791
- Recruiting
- St. Josef und St. Elisabeth Hospital
-
Principal Investigator:
- Carsten Saft
-
Contact:
- Barbara Kaminski
- Phone Number: +49 (0)234 509 2703
- Email: b.kaminski@klinikum-bochum.de
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Dresden, Germany, 1307
- Recruiting
- University Hospital Carl Gustav Carus Dresden
-
Contact:
- Simone Kögler
- Phone Number: 0049 351 4582524
- Email: simone.koegler@uniklinikum-dresden.de
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Principal Investigator:
- Björn Falkenburger
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Erlangen, Germany, 91054
- Recruiting
- University Hospital Erlangen
-
Contact:
- Susanne Seifert
- Phone Number: 0049 91318544751
- Email: susanne.seifert@uk-erlangen.de
-
Principal Investigator:
- Jürgen Winkler
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Freiburg, Germany, 79106
- Recruiting
- University Medical Center Freiburg
-
Contact:
- Gerit Kammel
- Phone Number: +49 761 270 54750
- Email: gerit.kammel@uniklinik-freiburg.de
-
Principal Investigator:
- Michel Rijntjes
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Kassel, Germany, 34128
- Recruiting
- Paracelsus Elena Klinik Kassel
-
Contact:
- Grit Langhans
- Phone Number: 0049 561 6009 - 169
- Email: grit.langhans@paracelsus-kliniken.de
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Principal Investigator:
- Claudia Trenkwalder
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Lübeck, Germany, 23538
- Recruiting
- University Hospital Schleswig-Holstein
-
Contact:
- Jenny Schmalfeld
- Phone Number: +49 451 3101 8214
- Email: jenny.schmalfeld@neuro.uni-luebeck.de
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Principal Investigator:
- Alexander Münchau
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Marburg, Germany, 25043
- Terminated
- University Hospital Giessen and Marburg
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Munich, Germany, 81675
- Recruiting
- Technical University of Munich
-
Contact:
- Antje Lüsebrink
- Phone Number: +49 89 4140 4693
- Email: antje.luesebrink@tum.de
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Principal Investigator:
- Adolf Weindl
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Münster, Germany, 48149
- Recruiting
- George-Huntington-Institut GmbH
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Principal Investigator:
- Ralf Reilmann
-
Contact:
- Anja Kletsch
- Phone Number: +49 251 7887880
- Email: anja.kletsch@ghi-muenster.de
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Taufkirchen, Germany, 84416
- Recruiting
- Kbo-Isar-Amper-Klinikum Taufkirchen (Vils)
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Contact:
- Michael Bachmaier
- Phone Number: +49 (0)808 493 4417
- Email: michael.bachmaier@kbo.de
-
Principal Investigator:
- Alzbeta Mühlbäck
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Ulm, Germany, 89081
- Recruiting
- University Hopsital of Ulm
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Principal Investigator:
- Bernhard Landwehrmeyer
-
Contact:
- Hela Jerbi
- Phone Number: +49 731 50063080
- Email: ambulanz-ulm@euro-hd.net
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Würzburg, Germany, 97080
- Recruiting
- University Hospital of Wuerzburg
-
Contact:
- Christine Leypold
- Phone Number: +49 931 201 23510
- Email: leypold_c@ukw.de
-
Principal Investigator:
- Thorsten Odorfer
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Republic Of Ireland
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Dublin 9, Republic Of Ireland, Ireland
- Recruiting
- Beaumont Hospital
-
Contact:
- Mairead Fallon
- Phone Number: 18 +00 (0)353 018 0920
- Email: maireadfallon@beaumont.ie
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Principal Investigator:
- Niall Pender
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Bari, Italy, 70124
- Recruiting
- Bari Policlinico General Hospital
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Contact:
- Vittorio Sciruicchio
- Phone Number: +39 3391032862
- Email: vsciru@tin.it
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Principal Investigator:
- Marina de Tommaso
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Bologna, Italy, 40139
- Recruiting
- IRCCS Istituto delle Scienze Neurologiche di Bologna
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Contact:
- Cesa Scaglione
- Phone Number: +39 0514966919
- Email: cesa.scaglione@unibo.it
-
Principal Investigator:
- Pietro Cortelli
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Genoa, Italy, 16132
- Recruiting
- Università degli Studi di Genova (DINOGMI)
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Contact:
- Roberta Marchese
- Phone Number: +39 0103538968
- Email: rmarchese@neurologia.unige.it
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Principal Investigator:
- Paola Mandich
-
Milan, Italy, 20133
- Terminated
- Fondazione IRCCS Istituto Neurologico Carlo Besta - Neurology
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Napoli, Italy, I-80131
- Recruiting
- University of Naples
-
Contact:
- Elena Salvatore
- Phone Number: +39 3356096228
- Email: e.salvatore@unina.it
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Principal Investigator:
- Giuseppe De Michele
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Rome, Italy, 00168
- Recruiting
- Universita Cattolica del Sacro Cuore
-
Contact:
- Flavia Torlizzi
- Phone Number: +39 338.8069142
- Email: flavia.torlizzi@policlinicogemelli.it
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Principal Investigator:
- Anna Rita Bentivoglio
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Rome, Italy, 00185
- Recruiting
- Lega Italiana Ricerca Huntington (LIRH)
-
Contact:
- Barbara D'Alessio
- Phone Number: +39 3272870465
- Email: barbara.dalessio@lirh.it
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Principal Investigator:
- Ferdinando Squitieri
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Rome, Italy, 00189
- Recruiting
- Azienda Ospedaliera Sant'Andrea
-
Contact:
- Silvia Romano
- Phone Number: +39 0633776044
- Email: silvia.romano@uniroma1.it
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Principal Investigator:
- Giovanni Ristori
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MI
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Milan, MI, Italy, 20133
- Recruiting
- Fondazione IRCCS Istituto Neurologico Carlo Besta - Genetics
-
Contact:
- Lorenzo Nanetti
- Phone Number: 0039 02 23942519
- Email: lorenzo.nanetti@istituto-besta.it
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Principal Investigator:
- Caterina Mariotti
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Groningen, Netherlands, 9700RB
- Recruiting
- University Medical Center Groningen
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Contact:
- Maraike Coenen
- Phone Number: +31 503619727
- Email: m.a.coenen@umcg.nl
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Principal Investigator:
- H.P.H. Kremer
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Leiden, Netherlands, 2300 RC
- Recruiting
- Leiden University Medical Centre
-
Principal Investigator:
- Susanne de Bot
-
Contact:
- Esther Arendts
- Phone Number: 31715261218
- Email: e.c.arendts@lumc.nl
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Maastricht, Netherlands, 6202 AZ
- Recruiting
- Clinical Trial Center Maastricht B.V.
-
Contact:
- Daisy Ramakers
- Phone Number: +31(0)43-3877676
- Email: daisy.ramakers@mumc.nl
-
Principal Investigator:
- Mayke Oosterloo
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Auckland, New Zealand, 1142
- Recruiting
- Auckland City Hospital
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Contact:
- Christina Buchanan
- Phone Number: 25747 093074949
- Email: cbuchanan@adhb.govt.nz
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Principal Investigator:
- Richard Roxburgh
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Christchurch, New Zealand, 8011
- Recruiting
- New Zealand Brain Research Institute at University of Otago
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Contact:
- Laura Paermentier
- Phone Number: 80825 +64 03 364 0825
- Email: laura.paermentier@cdhb.health.nz
-
Principal Investigator:
- Tim Anderson
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Wellington, New Zealand, 6021
- Recruiting
- Wellington Hospital
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Principal Investigator:
- David Bourke
-
Contact:
- Grace Hodgson
- Phone Number: +64 4 806 0078
- Email: Grace.Hodgson@ccdhb.org.nz
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Gdansk, Poland, 80-462
- Recruiting
- Copernicus Podmiotem Leczniczym sp. z o.o.
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Principal Investigator:
- Witold Soltan
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Contact:
- Ewa Narożańska
- Phone Number: +48 (0)512 384 610
- Email: gdansk.ewa1@gmail.com
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Katowice, Poland, 40-588
- Recruiting
- Krakowska Akademia Neurologii Sp. Z o.o
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Contact:
- Agnieszka Prymus
- Phone Number: +48 (0)505 723 735
- Email: agnieszkamarcin@o2.pl
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Principal Investigator:
- Monika Rudzinska-Bar
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Kraków, Poland, 31-505
- Recruiting
- Krakow - Krakowska Akademia Neurologii
-
Contact:
- Marta Pinkosz
- Phone Number: 48,663,506,020
- Email: marta.pinkosz@neurologia.org.pl
-
Principal Investigator:
- Monika Rudzinska-Bar
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Poznan, Poland, 60-529
- Terminated
- Solumed Centrum Medyczne
-
Warsaw, Poland, 02-097
- Terminated
- Medical University of Warsaw
-
Warsaw, Poland, 02-957
- Recruiting
- Institute of Psychiatry and Neurology, Warsaw
-
Principal Investigator:
- Grzegorz Witkowski
-
Contact:
- Karolina Ziora-Jakutowicz
- Phone Number: +48 (0)690 831 022
- Email: jakutowicz@ipin.edu.pl
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Amadora, Portugal, 2720-276
- Recruiting
- Hospital Prof Doutor Fernando Fonseca
-
Contact:
- Helena Cardoso
- Phone Number: +351 214348269
- Email: helenamcard26@gmail.com
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Principal Investigator:
- Cristina Costa, MD
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Coimbra, Portugal, 3000-075
- Not yet recruiting
- Hospital Universitário de Coimbra
-
Contact:
- Cristina Januário
- Phone Number: +351 239 400 400
-
Principal Investigator:
- Cristina Januário
-
Lisbon, Portugal, 1169-050
- Terminated
- Central Lisbon Hospital
-
Lisbon, Portugal, 1649-035
- Recruiting
- Hospital de Santa Maria / Instituto de Medicina Molecular
-
Contact:
- Tânia Silva
- Phone Number: 00 351 217930629
- Email: cicneuro.lisbon@gmail.com
-
Principal Investigator:
- Leonor Correia Guedes
-
Porto, Portugal, 4200-319
- Not yet recruiting
- Hospital Universitário de São João
-
Contact:
- Ana Oliveira
- Phone Number: 5119 +351 225 512 100
-
Contact:
- Leonor C Guedes
-
Principal Investigator:
- Ana Oliveira
-
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Badajoz, Spain, 06080
- Recruiting
- Hospital Infanta Cristina, Badajoz
-
Contact:
- Patrocinio García Moreno
- Phone Number: +34 (0)637 566 300
- Email: patrocinio.garciam@externos.salud-juntaex.es
-
Principal Investigator:
- Carmen Durán Herrera
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Barakaldo, Spain, 08036
- Recruiting
- Hospital de Cruces
-
Contact:
- Maria Angeles Acera Gill
- Phone Number: +34 (0)946 006 363
- Email: m.angeles.aceragil@osakidetza.net
-
Principal Investigator:
- Juan Carlos Gomez Esteban
-
Barcelona, Spain, 08025
- Recruiting
- Hospital de la Santa Creu i Sant Pau
-
Contact:
- Andrea Horta
- Phone Number: +34 (0)935 567 253
- Email: ahorta@santpau.cat
-
Principal Investigator:
- Jaime Kulisevsky
-
Barcelona, Spain, 08035
- Recruiting
- Hospital Mare de Déu de La Mercè
-
Contact:
- Patricia Vaquero Casado
- Phone Number: 0034934185826
- Email: pvaqueroc.merced@hospitalarias.es
-
Principal Investigator:
- Jesus Ruíz Idiago
-
Barcelona, Spain, 08036
- Recruiting
- Fundacion Clinic per a la Recerca Biomédica
-
Contact:
- Pilar Santacruz
- Phone Number: +34 (0)932 275 4003 088
- Email: psanta@clinic.cat
-
Principal Investigator:
- Esteban Muñoz
-
Barcelona,, Spain, 08907
- Recruiting
- Hospital Universitari de Bellvitge
-
Contact:
- Serge Jaumà Classen
- Phone Number: 34 93 335 70 11
-
Principal Investigator:
- Matilde Calopa Garriga
-
Burgos, Spain, 09006
- Recruiting
- Hospital Universitario de Burgos
-
Contact:
- Natividad Mariscal
- Phone Number: +34 (0)947 256 533
- Email: namariscal@saludcastillayleon.es
-
Principal Investigator:
- Esther Cubo
-
Madrid, Spain, 28034
- Recruiting
- Hospital Universitario Ramón y Cajal
-
Contact:
- Monica Aguilar
- Email: monicaaguilar.hrc@gmail.com
-
Principal Investigator:
- Jose Luis López-Sendón Moreno
-
Madrid, Spain, 28040
- Recruiting
- Fundación Jiménez Díaz
-
Contact:
- Noelia Rodríguez Martínez
- Phone Number: +34 (0)689 463 417
- Email: noe-rodriguez@hotmail.com
-
Principal Investigator:
- María Teresa Montojo
-
Palma De Mallorca, Spain, 07120
- Recruiting
- Hospital Son Espases
-
Contact:
- Mónica Rodríguez
- Phone Number: +34 (0)658 886 467
- Email: psicologa.huntington@gmail.com
-
Principal Investigator:
- Ines Legarda
-
Pamplona, Spain, 31008
- Recruiting
- Complejo Hospitalario de Navarra
-
Contact:
- Ana Carmona Rueda
- Phone Number: +34 (0)848 429 990
- Email: anacarmonarueda@gmail.com
-
Principal Investigator:
- María Ramos
-
Valencia, Spain, 46970
- Recruiting
- Fundacion Hospital Universitario La Fe
-
Contact:
- Francisco Casterá Brugada
- Phone Number: +34 (0)645 134 892
- Email: franciscocasteraenroll@gmail.com
-
Principal Investigator:
- Carmen Peiró
-
-
-
-
-
Gümligen, Switzerland, 3073
- Recruiting
- Siloah AG
-
Contact:
- Jessica Köhli
- Phone Number: 0041 31 352 20 70
- Email: jessica.koehli@siloah.ch
-
Principal Investigator:
- Jean-Marc Burgunder
-
Zürich, Switzerland, 08091
- Recruiting
- University Hospital Zurich
-
Contact:
- Maike Heider
- Phone Number: +41 44 255 55 20
- Email: maike.heider@usz.ch
-
Principal Investigator:
- Hans Jung
-
-
-
-
-
Aberdeen, United Kingdom, AB25 2ZA
- Recruiting
- University of Aberdeen
-
Contact:
- Stella Sihlabela
- Phone Number: +44 (0) 1224 550024
- Email: stella.sihlabela@nhs.scot
-
Principal Investigator:
- Zosia Miedzybrodzka
-
Birmingham, United Kingdom, B15 2FG
- Recruiting
- Birmingham and Solihull Mental Health NHS Foundation Trust
-
Contact:
- Elsa Benn
- Phone Number: +44 (0)121 3014337
- Email: e.benn@nhs.net
-
Principal Investigator:
- Hugh Rickards
-
Cambridge, United Kingdom, CB2 0PY
- Recruiting
- University of Cambridge
-
Contact:
- Amy Evans
- Phone Number: +44 (0)122 376 1863
- Email: ahe28@cam.ac.uk
-
Principal Investigator:
- Roger Barker
-
Cardiff, United Kingdom, CF24 4HQ
- Recruiting
- Cardiff University
-
Principal Investigator:
- Anne Rosser
-
Contact:
- Laura Mills
- Phone Number: +44 (0)2920 687613
- Email: millslj@cardiff.ac.uk
-
Dundee, United Kingdom, DD1 9SY
- Recruiting
- Tayside Health Board
-
Contact:
- Paula Mcfadyen
- Phone Number: +44 (0) 1382 424172
- Email: paula.mcfadyen@nhs.net
-
Principal Investigator:
- Jonathan Berg
-
Edinburgh, United Kingdom, EH4 2XU
- Recruiting
- Lothian Health Board
-
Principal Investigator:
- Peter Foley
-
Contact:
- Maria Dewar
- Phone Number: +44 (0) 1315 371116
- Email: maria.dewar@nhslothian.scot.nhs.uk
-
Glasgow, United Kingdom, G51 4TF
- Recruiting
- Greater Glasgow Health Board
-
Contact:
- Helen Bannister
- Phone Number: +44 (0)141 232 7600
- Email: helen.bannister@ggc.scot.nhs.uk
-
Principal Investigator:
- Stuart Ritchie
-
Kilmarnock, United Kingdom, KA2 OBB
- Terminated
- Ayrshire Central Hospital
-
Larbert, United Kingdom, FK5 4WR
- Terminated
- NHS Forth Valley
-
Leeds, United Kingdom, LS7 4SA
- Recruiting
- Leeds Teaching Hospitals
-
Contact:
- Callum Schofield
- Phone Number: 0113 39 24679
- Email: callum.schofield@nhs.net
-
Principal Investigator:
- Alison Kraus
-
Liverpool, United Kingdom, L9 7LJ
- Recruiting
- The Walton Centre
-
Principal Investigator:
- Rhys Davies
-
Contact:
- Andrea Clyne
- Phone Number: +44 01515563720
- Email: andrea.clyne@thewaltoncentre.nhs.uk
-
London, United Kingdom, SE1 9RT
- Recruiting
- Guy's and St. Thomas's NHS Foundation Trust
-
Contact:
- Elizabeth White
- Phone Number: 02071887865
- Email: elizabeth.white@gstt.nhs.uk
-
Principal Investigator:
- Thomasin Andrews
-
London, United Kingdom, SW17 0RE
- Recruiting
- St. George's Hospital
-
Principal Investigator:
- Nayana Lahiri
-
Contact:
- Hae-Ree Seo
- Phone Number: +44 (0)208 725 1971
- Email: haeree.seo@stgeorges.nhs.uk
-
London, United Kingdom, WC1B SEH
- Recruiting
- University College of London
-
Principal Investigator:
- Sarah Tabrizi
-
Contact:
- Jessica Lowe
- Email: jessica.lowe@ucl.ac.uk
-
Manchester, United Kingdom, M13 9WL
- Recruiting
- Central Manchester University Hospitals NHS Foundation Trust
-
Contact:
- Helen Chadwick
- Phone Number: 0161 701 2541
- Email: helen.chadwick@mft.nhs.uk
-
Principal Investigator:
- David Craufurd
-
Newcastle-upon-Tyne, United Kingdom, NE3 3XT
- Recruiting
- Northumberland, Tyne & Wear NHS Foundation Trust of St. Nicholas Hospital
-
Contact:
- Sarah Edwards
- Phone Number: +01 (0)912 467 392
- Email: sarah.edwards@ntw.nhs.uk
-
Principal Investigator:
- Suresh Komati
-
Northampton, United Kingdom, NN1 5DG
- Terminated
- St. Andrews Healthcare
-
Oxford, United Kingdom, OX3 9DU
- Recruiting
- Oxford Radcliffe Hospitals
-
Principal Investigator:
- Andrea Németh
-
Contact:
- Zara Skitt
- Phone Number: +44 (0)1865 234309
- Email: zara.skitt@ouh.nhs.uk
-
Plymouth, United Kingdom, PL6 8BX
- Recruiting
- Plymouth Hospitals NHS Trust
-
Contact:
- Charlotte Orr
- Phone Number: +44 (0)1752 432845
- Email: charlotteorr@nhs.net
-
Principal Investigator:
- Rupert Noad
-
Poole, United Kingdom, BH15 2JB
- Recruiting
- Poole Hospital
-
Contact:
- Annemieke Fox
- Phone Number: 0300 019 3210
- Email: annemieke.fox@poole.nhs.uk
-
Principal Investigator:
- John Burn
-
Reading, United Kingdom, RG1 5AN
- Recruiting
- Royal Berkshire NHS Foundation Trust
-
Contact:
- Zara Skitt
- Phone Number: +44 (0)1865 234309
- Email: zara.skitt@ouh.nhs.uk
-
Principal Investigator:
- Richard Armstrong
-
Sheffield, United Kingdom, S10 2TH
- Recruiting
- Sheffield Children's NHS Foundation Trust
-
Contact:
- Pauline Bayliss
- Phone Number: 0114 2260828
- Email: pauline.bayliss@sch.nhs.uk
-
Principal Investigator:
- Alisdair McNeill
-
Southampton, United Kingdom, so16 6yd
- Recruiting
- University Hospital Southampton
-
Contact:
- Veena Agarwal
- Phone Number: +44 (0)238 120 6132
- Email: veena.agarwal@uhs.nhs.uk
-
Principal Investigator:
- Christopher Kipps
-
Stoke-on-Trent, United Kingdom, ST4 8HH
- Recruiting
- North Staffordshire Combined Healthcare NHS Trust
-
Contact:
- Karen Kennedy
- Phone Number: 01782 652675
- Email: karen.kennedy@northstaffs.nhs.uk
-
Principal Investigator:
- George El-Nimr
-
Swindon, United Kingdom, SN3 6BW
- Active, not recruiting
- Avon and Wiltshire mental health partnership
-
-
Devon
-
Exeter, Devon, United Kingdom, EX25DW
- Recruiting
- Royal Devon and Exeter NHS Foundation Trust
-
Contact:
- Evanna McEvoy
- Phone Number: +44 (0)139 240 6979
- Email: evanna.mcevoy@nhs.net
-
Principal Investigator:
- Timothy Harrower
-
-
Leicestershire
-
Narborough, Leicestershire, United Kingdom, LE19 4SL
- Recruiting
- Leicestershire Partnership
-
Contact:
- Iain Termie
- Email: iain.termie@leicspart.nhs.uk
-
Principal Investigator:
- Reza Kiana
-
-
UK
-
Bristol, UK, United Kingdom, BS10 5NB
- Recruiting
- North Bristol NHS Trust
-
Contact:
- Rebecca Pracownik
- Phone Number: +44 (0)117 414 8194
- Email: rebecca.pracownik@nbt.nhs.uk
-
Principal Investigator:
- Elizabeth Coulthard
-
Kirkcaldy, UK, United Kingdom, KY1 2ND
- Recruiting
- Fife Health Board
-
Contact:
- Nicola Johns
- Phone Number: +44 (0) 1592 647993
- Email: nicola.johns@nhs.net
-
Principal Investigator:
- Simon Rubidge
-
Wrexham, UK, United Kingdom, LL13 7TD
- Recruiting
- Betsi Cadwaladr University Health Board
-
Contact:
- Julia Roberts
- Phone Number: +44 (0)1248 383091
- Email: julia.roberts@bangor.ac.uk
-
Principal Investigator:
- Alberto Salmoiraghi
-
-
-
-
Alabama
-
Birmingham, Alabama, United States, 35294
- Recruiting
- University of Alabama
-
Contact:
- Jenna Smith
- Phone Number: 205-996-2807
- Email: jltidwell@uabmc.edu
-
Principal Investigator:
- Victor Sung
-
-
Arizona
-
Phoenix, Arizona, United States, 85013
- Recruiting
- St. Joseph's Hospital and Medical Center
-
Principal Investigator:
- Nicki Niemann
-
Contact:
- Aleksander Gomez
- Phone Number: 602-406-3719
- Email: aleksander.gomez@commonspirit.org
-
-
California
-
Irvine, California, United States, 92697
- Recruiting
- University of California - Irvine Medical Center
-
Principal Investigator:
- Anna Morenkova
-
Contact:
- Veronica Martin
- Phone Number: 714-456-7760
- Email: vero@hs.uci.edu
-
Loma Linda, California, United States, 92354
- Terminated
- Loma Linda Medical Center
-
Los Angeles, California, United States, 90095
- Recruiting
- University of California - Los Angeles
-
Contact:
- Aaron Fisher
- Phone Number: 310-794-1225
- Email: adfisher@mednet.ucla.edu
-
Principal Investigator:
- Susan Perlman
-
Sacramento, California, United States, 95817
- Recruiting
- University of California - Davis
-
Contact:
- Talia Hamm
- Phone Number: (916) 734-3541
- Email: tghamm@ucdavis.edu
-
Contact:
- Rajwant Singh
- Phone Number: 916-734-6278
- Email: rajsin@ucdavis.edu
-
Principal Investigator:
- Alexandra Duffy
-
San Diego, California, United States, 92037
- Recruiting
- University of California - San Diego
-
Principal Investigator:
- Jody Corey-Bloom
-
Contact:
- Sean Patel
- Phone Number: 858-249-0568
- Email: svp004@health.ucsd.edu
-
San Francisco, California, United States, 94158
- Recruiting
- University of California - San Francisco
-
Contact:
- Zach Lamson
- Phone Number: 415-502-0670
- Email: zach.lamson@ucsf.edu
-
Principal Investigator:
- Michael Geschwind
-
-
Colorado
-
Englewood, Colorado, United States, 80113
- Recruiting
- CenExel Rocky Mountain Clinical Research, LLC
-
Contact:
- Liza Heap
- Phone Number: 303-762-6674
- Email: e.heap@cenexel.com
-
Principal Investigator:
- Rajeev Kumar
-
-
Connecticut
-
Farmington, Connecticut, United States, 06032
- Recruiting
- University of Connecticut
-
Contact:
- Robin Zingales-Browne
- Phone Number: 860-679-4418
- Email: rbrowne@uchc.edu
-
Principal Investigator:
- Shaikab Khan
-
-
District of Columbia
-
Washington, District of Columbia, United States, 20007
- Recruiting
- Georgetown University
-
Principal Investigator:
- Karen Anderson
-
Contact:
- Erin Koppel
- Phone Number: 202-687-1525
- Email: ek875@georgetown.edu
-
-
Florida
-
Gainesville, Florida, United States, 32607
- Recruiting
- University of Florida Board of Trustees
-
Contact:
- Randy Foli
- Phone Number: 352-733-2433
- Email: randy.foli@neurology.ufl.edu
-
Principal Investigator:
- Nikolaus McFarland
-
Miami, Florida, United States, 33431
- Recruiting
- University of Miami
-
Contact:
- Wilfredo Rodriguez Somoza
- Phone Number: 561-939-4169
- Email: wxr205@med.miami.edu
-
Principal Investigator:
- Carlos Singer
-
Tampa, Florida, United States, 33612
- Recruiting
- University of South Florida, HDSA Center of Excellence at USF
-
Contact:
- Kelly Elliott
- Phone Number: 813-974-6022
- Email: kelliot@usf.edu
-
Principal Investigator:
- Juan Sanchez-Ramos
-
-
Georgia
-
Atlanta, Georgia, United States, 30329
- Recruiting
- Emory University, Wesley Woods Health Center
-
Contact:
- Elaine Sperin
- Phone Number: 404-712-7044
- Email: esperin@emory.edu
-
Principal Investigator:
- Stewart Factor
-
Augusta, Georgia, United States, 30912
- Terminated
- Georgia Health Sciences University
-
-
Illinois
-
Chicago, Illinois, United States, 60611
- Recruiting
- Northwestern University
-
Principal Investigator:
- Danny Bega
-
Contact:
- Zsa Zsa Brown
- Phone Number: 312-503-4121
- Email: zsazsa.brown@northwestern.edu
-
Chicago, Illinois, United States, 60637
- Terminated
- University of Chicago
-
Chicago, Illinois, United States, 68612
- Recruiting
- Rush University Medical Center
-
Principal Investigator:
- Deborah A. Hall
-
Contact:
- Tyler Svymbersky
- Phone Number: 312-563-0676
- Email: Tyler_Svymbersky@rush.edu
-
Rockford, Illinois, United States, 61107
- Terminated
- University of Illinois College of Medicine at Rockford
-
-
Indiana
-
Indianapolis, Indiana, United States, 46202
- Recruiting
- Indiana University
-
Principal Investigator:
- Christopher James
-
Contact:
- Courtney Gatza
- Phone Number: 317-274-9657
- Email: cgatza@iupui.edu
-
-
Iowa
-
Iowa City, Iowa, United States, 52245
- Recruiting
- University of Iowa
-
Contact:
- Julie Koeppel
- Phone Number: 319-353-4551
- Email: julie-koeppel@uiowa.edu
-
Principal Investigator:
- Annie Killoran
-
-
Kansas
-
Kansas City, Kansas, United States, 66160
- Recruiting
- University of Kansas Medical Center
-
Principal Investigator:
- Richard Dubinksy
-
Contact:
- Cameron Zoraghchi
- Phone Number: 913-588-0667
- Email: czoraghchi2@kumc.edu
-
Wichita, Kansas, United States, 67226
- Recruiting
- Hereditary Neurological Disease Center
-
Contact:
- Gregory Suter
- Phone Number: 316-609-3020
- Email: hndcentre@aol.com
-
Principal Investigator:
- William Mallonee
-
-
Kentucky
-
Louisville, Kentucky, United States, 40202
- Recruiting
- University of Louisville
-
Principal Investigator:
- Victoria Holiday
-
Contact:
- Annette Robinson
- Phone Number: 502-540-3585
- Email: annette.robinson@louisville.edu
-
-
Maryland
-
Baltimore, Maryland, United States, 21287
- Recruiting
- Johns Hopkins University
-
Contact:
- Etta Goldman
- Phone Number: 410-614-9483
- Email: egoldm17@jhmi.edu
-
Principal Investigator:
- Jee Bang
-
Baltimore, Maryland, United States, 21201
- Withdrawn
- University of Maryland School of Medicine
-
-
Massachusetts
-
Boston, Massachusetts, United States, 02215
- Recruiting
- Beth Israel Deaconess Medical Center
-
Contact:
- Sophia Antonioli
- Phone Number: 617-667-2355
- Email: santoni1@bidmc.harvard.edu
-
Principal Investigator:
- Samuel Frank
-
Boston, Massachusetts, United States, 02118
- Terminated
- Boston University Medical Center
-
-
Michigan
-
Ann Arbor, Michigan, United States, 48105
- Recruiting
- University of Michigan
-
Contact:
- Chris Graves
- Phone Number: 734-764-0644
- Email: gravesch@med.umich.edu
-
Principal Investigator:
- Noelle Carlozzi
-
Detroit, Michigan, United States, 48201
- Withdrawn
- Wayne State University
-
-
Minnesota
-
Minneapolis, Minnesota, United States, 55415
- Recruiting
- Hennepin County Medical Center
-
Contact:
- Dawn Radtke
- Phone Number: 612-873-2943
- Email: dawn.radtke@hcmed.org
-
Principal Investigator:
- Martha Nance
-
-
Missouri
-
Saint Louis, Missouri, United States, 63110
- Recruiting
- Washington University in St. Louis
-
Contact:
- Stacey Barton
- Phone Number: 314-362-3471
- Email: bartons@neuro.wustl.edu
-
Principal Investigator:
- Joel Perlmutter
-
-
Nebraska
-
Omaha, Nebraska, United States, 68106
- Recruiting
- University of Nebraska Medical Center
-
Contact:
- Nick Miller
- Phone Number: 402-552-6241
- Email: nicholas.miller@unmc.edu
-
Principal Investigator:
- Amy Hellman
-
-
Nevada
-
Las Vegas, Nevada, United States, 89102
- Recruiting
- Cleveland Clinic - Las Vegas
-
Contact:
- Liliana Dumitrescu
- Phone Number: 702-483-6016
- Email: dumitrl@ccf.org
-
Principal Investigator:
- Zoltan Mari
-
-
New Jersey
-
Camden, New Jersey, United States, 08103
- Active, not recruiting
- Cooper University Hospital
-
New Brunswick, New Jersey, United States, 08901
- Recruiting
- Rutgers, The State University of New Jersey
-
Contact:
- Sheila Redding
- Phone Number: 732-235-7718
- Email: sr1238@rwjms.rutgers.edu
-
Principal Investigator:
- Machteld Hillen
-
-
New York
-
Albany, New York, United States, 12208
- Recruiting
- Albany Medical College
-
Principal Investigator:
- Era Hanspal
-
Contact:
- Alicia Leader
- Phone Number: 518-262-6682
- Email: downeya@amc.edu
-
New York, New York, United States, 10032
- Recruiting
- Columbia University
-
Principal Investigator:
- Karen Marder
-
Contact:
- Paula Wasserman
- Phone Number: 212-305-4597
- Email: pl2032@cumc.columbia.edu
-
Rochester, New York, United States, 14618
- Recruiting
- University of Rochester
-
Contact:
- Hannah Mesmer
- Phone Number: 585-341-7500
- Email: hannah_mesmer@urmc.rochester.edu
-
Principal Investigator:
- Frederick Marshall
-
-
North Carolina
-
Durham, North Carolina, United States, 27705
- Recruiting
- Duke University
-
Principal Investigator:
- Burton Scott
-
Contact:
- Michelle Moshkowitz
- Phone Number: 919-664-0865
- Email: michelle.moshkowitz@duke.edu
-
Winston-Salem, North Carolina, United States, 27157
- Recruiting
- Wake Forest School of Medicine
-
Contact:
- Summer Harris
- Phone Number: 336-716-3919
- Email: sdharris@wakehealth.edu
-
Principal Investigator:
- Jessica Tate
-
-
North Dakota
-
Fargo, North Dakota, United States, 58122
- Recruiting
- Sanford Health
-
Contact:
- Destini Spaeth
- Phone Number: 701-234-2474
- Email: destini.spaeth@sanfordhealth.org
-
Principal Investigator:
- Tanya Harlow
-
-
Ohio
-
Cincinnati, Ohio, United States, 42519
- Recruiting
- University of Cincinatti
-
Principal Investigator:
- Andrew Duker
-
Contact:
- Bobbie Stubbeman
- Phone Number: 513-558-0142
- Email: stubbebl@ucmail.uc.edu
-
Cleveland, Ohio, United States, 44195
- Recruiting
- Cleveland Clinic
-
Principal Investigator:
- Adam Margolius
-
Contact:
- Courtney Cannon
- Phone Number: 216-445-5637
- Email: cannonc2@ccf.org
-
Columbus, Ohio, United States, 43021
- Recruiting
- The Ohio State University
-
Principal Investigator:
- Sandra Kostyk
-
Contact:
- Kaleigh Clevenger
- Phone Number: 614-257-2784
- Email: kaleigh.clevenger@osumc.edu
-
-
Oregon
-
Portland, Oregon, United States, 97239
- Recruiting
- Oregon Health and Science University
-
Principal Investigator:
- Amie Hiller, MD
-
Contact:
- Emily Leonard
- Phone Number: 503-367-4719
- Email: leonarde@ohsu.edu
-
-
Pennsylvania
-
Philadelphia, Pennsylvania, United States, 19107
- Recruiting
- University of Pennsylvania
-
Contact:
- Jennifer Klapper
- Phone Number: 215-829-5176
- Email: jennifer.klapper@pennmedicine.upenn.edu
-
Principal Investigator:
- Aaron Lasker
-
Pittsburgh, Pennsylvania, United States, 15213
- Recruiting
- University of Pittsburgh
-
Contact:
- Patricia Conlon
- Phone Number: 412-692-2394
- Email: patricia.conlon@pitt.edu
-
Principal Investigator:
- Valerie Suski
-
-
South Carolina
-
Columbia, South Carolina, United States, 29203
- Recruiting
- University of South Carolina
-
Principal Investigator:
- Miroslav Cuturic
-
Contact:
- Michael Parrish
- Phone Number: 803-545-6103
- Email: michael.parrish@prismahealth.org
-
-
Tennessee
-
Memphis, Tennessee, United States, 38163
- Terminated
- University of Tennessee Health Science Center
-
Nashville, Tennessee, United States, 37232
- Recruiting
- Vanderbilt University Medical Center
-
Contact:
- Elizabeth Huitz
- Phone Number: 615-936-1007
- Email: elizabeth.huitz@vumc.org
-
Principal Investigator:
- Daniel Claassen
-
-
Texas
-
Houston, Texas, United States, 77030
- Recruiting
- Baylor College of Medicine
-
Contact:
- Clarissa Sanchez
- Phone Number: 713-798-5120
- Email: clarissa.sanchez@bcm.edu
-
Principal Investigator:
- Joseph Jankovic
-
Houston, Texas, United States, 77030
- Recruiting
- University of Texas Health Science Center
-
Contact:
- Brittany Duncan
- Phone Number: 713-486-3134
- Email: Brittany.J.Duncan@uth.tmc.edu
-
Principal Investigator:
- Erin Furr Stimming
-
-
Utah
-
Salt Lake City, Utah, United States, 84108
- Recruiting
- University of Utah
-
Contact:
- Paola Wall
- Phone Number: 801-581-4543
- Email: paola.wall@hsc.utah.edu
-
Principal Investigator:
- Paolo Moretti
-
-
Vermont
-
Burlington, Vermont, United States, 05401
- Recruiting
- University of Vermont
-
Contact:
- Jasmine Marsh
- Phone Number: 802-847-1597
- Email: jasmine.marsh@uvmhealth.org
-
Principal Investigator:
- James Boyd
-
-
Virginia
-
Charlottesville, Virginia, United States, 22908
- Recruiting
- University of Virginia
-
Contact:
- Lauren Miller
- Phone Number: 434-982-6599
- Email: fdk5dn@virginia.edu
-
Principal Investigator:
- Alex Dalrymple
-
Henrico, Virginia, United States, 23298
- Recruiting
- Virginia Commonwealth University Parkinson's and Movement Disorders Center
-
Contact:
- Kara McHaney
- Phone Number: 804-628-1809
- Email: kara.mchaney@vcuhealth.org
-
Principal Investigator:
- Stephanie Bissonnette
-
Richmond, Virginia, United States, 23233
- Active, not recruiting
- Virginia Commonwealth University
-
-
Washington
-
Kirkland, Washington, United States, 98034
- Recruiting
- Booth Gardner Parkinson's Care Center (Evergreen Health)
-
Contact:
- Anthony Sander
- Phone Number: 425-899-5416
- Email: agsader@evergreenhealthcare.org
-
Principal Investigator:
- Pinky Argarwal
-
Seattle, Washington, United States, 98195
- Recruiting
- University of Washington Medical Center
-
Principal Investigator:
- Ali Samii
-
Contact:
- Amy Good
- Phone Number: 206-543-5933
- Email: amygood@uw.edu
-
Contact:
- Debra Castillo
- Phone Number: 206-543-3647
- Email: debradel@uw.edu
-
-
Wisconsin
-
Madison, Wisconsin, United States, 53705
- Recruiting
- University of Wisconsin - Madison
-
Principal Investigator:
- Kathleen Shannon, MD
-
Contact:
- Kim Janko
- Phone Number: 608-262-8027
- Email: janko@neurology.wisc.edu
-
-
Participation Criteria
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
Eligibility Criteria
Ages Eligible for Study
18 years and older (Adult, Older Adult)
Accepts Healthy Volunteers
Yes
Sampling Method
Non-Probability Sample
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.
Description
Inclusion Criteria:
- Carriers: This group comprises the primary study population and consists of individuals who carry the HD gene expansion mutation.
- Controls: This group comprises the comparator study population and consists of individuals who do not carry the HD expansion mutation.
These two major categories can be further subdivided into six different subgroups of eligible individuals:
- Manifest/Motor-manifest HD: Carriers with clinical features that are regarded in the opinion of the investigator as diagnostic of HD.
- Pre-Manifest/-Motor-manifest HD: Carriers without clinical features regarded as diagnostic of HD.
- Genotype Unknown: This group includes a first or second degree relative (i.e., related by blood to a carrier) who has not undergone predictive testing for HD and therefore has an undetermined carrier status.
- Genotype Negative: This group includes a first or second degree relative (i.e., related by blood to a carrier) who has undergone predictive testing for HD and is known not to carry the HD expansion mutation.
- Family Control: Family members or individuals not related by blood to carriers (e.g., spouses, partners, caregivers).
- Community Controls: Individuals unrelated to HD carriers who did not grow up in a family affected by HD. Data collected from community controls will be used for generation of normative data for sub-studies.
Participant status will be captured in the study database using 2 variables: 1) Investigator Determined Status: this will be based on clinical signs and symptoms and genotyping performed as part of medical care, and will be updated at every visit; and 2) Research Genotyping Status: this will be based on genotyping conducted as part of Enroll-HD study procedures. Based on research genotyping, participants will be reclassified under this variable from Genotype Unknown to 'Carriers' or 'Controls'. Investigators and participants will be blinded to this reclassification.
Exclusion Criteria:
- Individuals who do not meet inclusion criteria,
- Individuals with choreic movement disorders in the context of a negative test for the HD gene mutation.
- For Community Controls: those individuals with a major central nervous system disorder will be excluded (e.g. stroke, Parkinson's disease, multiple sclerosis, etc.).
Participants under 18 may be eligible to participate (if they have juvenile-onset HD).
Study Plan
This section provides details of the study plan, including how the study is designed and what the study is measuring.
How is the study designed?
Design Details
- Observational Models: Other
- Time Perspectives: Prospective
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
|---|---|---|
|
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 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.
|
through study completion, an average of 1 year
|
|
Functional Assessments: UHDRS '99 Total Functional Capacity, UHDRS '99 Functional Assessment Scale, UHDRS '99 Independence Scale
Time Frame: through study completion, an average of 1 year
|
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.
|
through study completion, an average of 1 year
|
|
Problem Behaviors Assessment-Short (PBA-s)
Time Frame: through study completion, an average of 1 year
|
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.
|
through study completion, an average of 1 year
|
|
Cognitive Assessments: Symbol Digit Modality Test; Stroop Color Naming; Stroop Word Reading; Categorical Verbal Fluency
Time Frame: through study completion, an average of 1 year
|
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.
|
through study completion, an average of 1 year
|
Collaborators and Investigators
This is where you will find people and organizations involved with this study.
Sponsor
Investigators
- Principal Investigator: Bernhard G Landwehrmeyer, MD, PhD, University of Ulm
- Study Director: Jamie Levey, CHDI Foundation, Inc.
Publications and helpful links
The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.
Study record dates
These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.
Study Major Dates
Study Start (Actual)
July 1, 2012
Primary Completion (Estimated)
January 1, 2062
Study Completion (Estimated)
January 1, 2062
Study Registration Dates
First Submitted
April 6, 2012
First Submitted That Met QC Criteria
April 9, 2012
First Posted (Estimated)
April 10, 2012
Study Record Updates
Last Update Posted (Actual)
February 28, 2024
Last Update Submitted That Met QC Criteria
February 26, 2024
Last Verified
February 1, 2024
More Information
Terms related to this study
Additional Relevant MeSH Terms
- Mental Disorders
- Brain Diseases
- Central Nervous System Diseases
- Nervous System Diseases
- Neurocognitive Disorders
- Genetic Diseases, Inborn
- Basal Ganglia Diseases
- Movement Disorders
- Neurodegenerative Diseases
- Dyskinesias
- Heredodegenerative Disorders, Nervous System
- Dementia
- Cognition Disorders
- Chorea
- Huntington Disease
Other Study ID Numbers
- Enroll -HD
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
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