Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
Start Date
7/1/2012
Completion Date
1/1/2062
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. 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.
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.
Eligibility Criteria
Age Range: 18 years to No maximum
Conditions
Locations
University of Alabama
Birmingham, Alabama 35294
United States
St. Joseph's Hospital and Medical Center
Phoenix, Arizona 85013
United States
University of California - Irvine Medical Center
Irvine, California 92697
United States
Loma Linda Medical Center
Loma Linda, California 92354
United States
University of California - Los Angeles
Los Angeles, California 90095
United States
University of California - Davis
Sacramento, California 95817
United States
University of California - San Diego
San Diego, California 92037
United States
University of California - San Francisco
San Francisco, California 94158
United States
Cenexel Rocky Mountain Clinical Research, LLC
Englewood, Colorado 80113
United States
University of Connecticut
Farmington, Connecticut 06032
United States
Georgetown University
Washington D.C., District of Columbia 20007
United States
University of Florida Board of Trustees
Gainesville, Florida 32607
United States
University of Miami
Miami, Florida 33431
United States
University of South Florida, HDSA Center of Excellence at USF
Tampa, Florida 33612
United States
Emory University, Wesley Woods Health Center
Atlanta, Georgia 30329
United States
Georgia Health Sciences University
Augusta, Georgia 30912
United States
Northwestern University
Chicago, Illinois 60611
United States
University of Chicago
Chicago, Illinois 60637
United States
Rush University Medical Center
Chicago, Illinois 68612
United States
University of Illinois College of Medicine at Rockford
Rockford, Illinois 61107
United States
Indiana University
Indianapolis, Indiana 46202
United States
University of Iowa
Iowa City, Iowa 52245
United States
University of Kansas Medical Center
Kansas City, Kansas 66160
United States
Hereditary Neurological Disease Center
Wichita, Kansas 67226
United States
University of Louisville
Louisville, Kentucky 40202
United States
University of Maryland School of Medicine
Baltimore, Maryland 21201
United States
Johns Hopkins University
Baltimore, Maryland 21287
United States
Boston University Medical Center
Boston, Massachusetts 02118
United States
Beth Israel Deaconess Medical Center
Boston, Massachusetts 02215
United States
University of Michigan
Ann Arbor, Michigan 48105
United States
Wayne State University
Detroit, Michigan 48201
United States
Hennepin County Medical Center
Minneapolis, Minnesota 55415
United States
Washington University in St. Louis
St Louis, Missouri 63110
United States
University of Nebraska Medical Center
Omaha, Nebraska 68106
United States
Cleveland Clinic - Las Vegas
Las Vegas, Nevada 89102
United States
Cooper University Hospital
Camden, New Jersey 08103
United States
Rutgers, the State University of New Jersey
New Brunswick, New Jersey 08901
United States
Albany Medical College
Albany, New York 12208
United States
Columbia University
New York, New York 10032
United States
University of Rochester
Rochester, New York 14618
United States
Duke University
Durham, North Carolina 27705
United States
Wake Forest School of Medicine
Winston-Salem, North Carolina 27157
United States
Sanford Health
Fargo, North Dakota 58122
United States
University of Cincinatti
Cincinnati, Ohio 42519
United States
Cleveland Clinic
Cleveland, Ohio 44195
United States
The Ohio State University
Columbus, Ohio 43021
United States
Oregon Health and Science University
Portland, Oregon 97239
United States
University of Pennsylvania
Philadelphia, Pennsylvania 19107
United States
University of Pittsburgh
Pittsburgh, Pennsylvania 15213
United States
University of South Carolina
Columbia, South Carolina 29203
United States
University of Tennessee Health Science Center
Memphis, Tennessee 38163
United States
Vanderbilt University Medical Center
Nashville, Tennessee 37232
United States
Baylor College of Medicine
Houston, Texas 77030
United States
University of Texas Health Science Center
Houston, Texas 77030
United States
University of Utah
Salt Lake City, Utah 84108
United States
University of Vermont
Burlington, Vermont 05401
United States
University of Virginia
Charlottesville, Virginia 22908
United States
Virginia Commonwealth University Parkinson's and Movement Disorders Center
Henrico, Virginia 23298
United States
Virginia Commonwealth University
Richmond, Virginia 23233
United States
Booth Gardner Parkinson's Care Center (Evergreen Health)
Kirkland, Washington 98034
United States
University of Washington Medical Center
Seattle, Washington 98195
United States
University of Wisconsin - Madison
Madison, Wisconsin 53705
United States
Instituto de Neurociencias Buenos Aires (INEBA)
Buenos Aires,
Argentina
Westmead Hospital
Westmead, New South Wales 2145
Australia
Monash University
Melbourne, Victoria 3800
Australia
The Neurosciences Unit - North Metropolitan Hospital
Perth, Western Australia 6010
Australia
University of Melbourne, Royal Melbourne Hospital
Parkville, 3052
Australia
Universitatsklinik Innsbruck
Innsbruck, 6020
Austria
University Hospitals Leuven
Leuven, Vlaams-Brabant 3000
Belgium
Bruxelles - Erasme
Brussels, 1070
Belgium
Institut de Pathologie et de Génétique (IPG)
Charleroi, B-6041
Belgium
Hôpital du Beau Vallon ASBL
Saint-Servais, B-5002
Belgium
University of Calgary, Movement Disorders Program
Calgary, Alberta T2N 4N1
Canada
University of Alberta (Glenrose)
Edmonton, Alberta T5G 0B7
Canada
University of Alberta Hospital in Edmonton
Edmonton, Alberta T6G 2B7
Canada
University of British Columbia
Vancouver, British Columbia V6T 2B5
Canada
Nova Scotia Health Authority
Halifax, Nova Scotia B3H 3A7
Canada
Centre for Movement Disorders
Markham, Ontario L6B 1C9
Canada
The Ottawa Hospital
Ottawa, Ontario K1Y 4E9
Canada
North York General Hospital
Toronto, Ontario M2K 1E2
Canada
CHUM Hospital of Notre Dame
Montreal, Quebec H2L 4M1
Canada
CETRAM
Santiago,
Chile
Universidad de Antioquia, Grupo de Neurociencias
Medellín, Antioquia 51922
Colombia
Servicios Médicos MS, Clínica de Marly
Bogotá, Cundinamarca 110231
Colombia
University Hospital of Aarhus
Aarhus, 8000
Denmark
University Hospital of Copenhagen
Copenhagen, DK2100
Denmark
University Hospital of Odense
Odense, 5000
Denmark
Hôpitaux Universitaires de Strasbourg Hôpital de Hautepierre-Service de Neurologie
Strasbourg, Alsace Lorraine 67098
France
CHU Amiens-Picardie
Amiens, 80054
France
CHU Angers, Centre de Référence Maladies Neurogénétiques
Angers, 49100
France
Bordeaux - Huntington Disease competencies center
Bordeaux, 33076
France
CHU Gabriel-Montpied
Clermont-Ferrand, 63003
France
Hôpital Henri Mondor, Centre d'Investigation Clinique
Créteil, 94000
France
Lille-Amiens - Huntington Disease Constituent site
Lille, 59037
France
Hôpital La Timone
Marseille, 13005
France
CHU Montpellier
Montpellier, 34295
France
Institut du Cerveau et de la Moelle Epinière
Paris, 75646
France
Hôpital Purpan, Centre d'Investigation Clinique
Toulouse, 31059
France
University Hospital Aachen
Aachen, 52074
Germany
University of Berlin
Berlin, 10117
Germany
St. Josef und St. Elisabeth Hospital
Bochum, 44791
Germany
University Hospital Carl Gustav Carus Dresden
Dresden, 1307
Germany
University Hospital Erlangen
Erlangen, 91054
Germany
University Medical Center Freiburg
Freiburg im Breisgau, 79106
Germany
Paracelsus Elena Klinik Kassel
Kassel, 34128
Germany
University Hospital Schleswig-Holstein
Lübeck, 23538
Germany
University Hospital Giessen and Marburg
Marburg, 25043
Germany
Technical University of Munich
Munich, 81675
Germany
George-Huntington-Institut GmbH
Münster, 48149
Germany
kbo-Isar-Amper-Klinikum Taufkirchen (Vils)
Taufkirchen, 84416
Germany
University Hopsital of Ulm
Ulm, 89081
Germany
University Hospital of Wuerzburg
Würzburg, 97080
Germany
Beaumont Hospital
Dublin, Republic of Ireland
Ireland
Fondazione IRCCS Istituto Neurologico Carlo Besta - Genetics
Milan, MI 20133
Italy
Bari Policlinico General Hospital
Bari, 70124
Italy
IRCCS Istituto delle Scienze Neurologiche di Bologna
Bologna, 40139
Italy
Università degli Studi di Genova (DINOGMI)
Genoa, 16132
Italy
Fondazione IRCCS Istituto Neurologico Carlo Besta - Neurology
Milan, 20133
Italy
University of Naples
Naples, I-80131
Italy
Università Cattolica del Sacro Cuore
Rome, 00168
Italy
Lega Italiana Ricerca Huntington (LIRH)
Rome, 00185
Italy
Azienda Ospedaliera Sant'Andrea
Rome, 00189
Italy
University Medical Center Groningen
Groningen, 9700RB
Netherlands
Leiden University Medical Centre
Leiden, 2300 RC
Netherlands
Clinical Trial Center Maastricht B.V.
Maastricht, 6202 AZ
Netherlands
Auckland City Hospital
Auckland, 1142
New Zealand
New Zealand Brain Research Institute at University of Otago
Christchurch, 8011
New Zealand
Wellington Hospital
Wellington, 6021
New Zealand
Copernicus Podmiotem Leczniczym sp. z o.o.
Gdansk, 80-462
Poland
Krakowska Akademia Neurologii Sp. z o.o
Katowice, 40-588
Poland
Krakow - Krakowska Akademia Neurologii
Krakow, 31-505
Poland
Solumed Centrum Medyczne
Poznan, 60-529
Poland
Medical University of Warsaw
Warsaw, 02-097
Poland
Institute of Psychiatry and Neurology, Warsaw
Warsaw, 02-957
Poland
Hospital Prof Doutor Fernando Fonseca
Amadora, 2720-276
Portugal
Hospital Universitário de Coimbra
Coimbra, 3000-075
Portugal
Central Lisbon Hospital
Lisbon, 1169-050
Portugal
Hospital de Santa Maria / Instituto de Medicina Molecular
Lisbon, 1649-035
Portugal
Hospital Universitário de São João
Porto, 4200-319
Portugal
Hospital Infanta Cristina, Badajoz
Badajoz, 06080
Spain
Hospital de Cruces
Barakaldo, 08036
Spain
Hospital de la Santa Creu i Sant Pau
Barcelona, 08025
Spain
Hospital Mare de Déu de la Mercè
Barcelona, 08035
Spain
Fundacion Clinic per a La Recerca Biomèdica
Barcelona, 08036
Spain
Hospital Universitari de Bellvitge
Barcelona, 08907
Spain
Hospital Universitario de Burgos
Burgos, 09006
Spain
Hospital Universitario Ramón y Cajal
Madrid, 28034
Spain
Fundación Jiménez Díaz
Madrid, 28040
Spain
Hospital Son Espases
Palma de Mallorca, 07120
Spain
Complejo Hospitalario de Navarra
Pamplona, 31008
Spain
Fundacion Hospital Universitario La Fe
Valencia, 46970
Spain
Siloah AG
Gümligen, 3073
Switzerland
University Hospital Zurich
Zurich, 08091
Switzerland
Royal Devon and Exeter NHS Foundation Trust
Exeter, Devon EX25DW
United Kingdom
Leicestershire Partnership
Narborough, Leicestershire LE19 4SL
United Kingdom
North Bristol NHS Trust
Bristol, UK BS10 5NB
United Kingdom
Fife Health Board
Kirkcaldy, UK KY1 2ND
United Kingdom
Betsi Cadwaladr University Health Board
Wrexham, UK LL13 7TD
United Kingdom
University of Aberdeen
Aberdeen, AB25 2ZA
United Kingdom
Birmingham and Solihull Mental Health NHS Foundation Trust
Birmingham, B15 2FG
United Kingdom
University of Cambridge
Cambridge, CB2 0PY
United Kingdom
Cardiff University
Cardiff, CF24 4HQ
United Kingdom
Tayside Health Board
Dundee, DD1 9SY
United Kingdom
Lothian Health Board
Edinburgh, EH4 2XU
United Kingdom
Greater Glasgow Health Board
Glasgow, G51 4TF
United Kingdom
Ayrshire Central Hospital
Kilmarnock, KA2 OBB
United Kingdom
NHS Forth Valley
Larbert, FK5 4WR
United Kingdom
Leeds Teaching Hospitals
Leeds, LS7 4SA
United Kingdom
The Walton Centre
Liverpool, L9 7LJ
United Kingdom
Guy's and St. Thomas's NHS Foundation Trust
London, SE1 9RT
United Kingdom
St. George's Hospital
London, SW17 0RE
United Kingdom
University College of London
London, WC1B SEH
United Kingdom
Central Manchester University Hospitals NHS Foundation Trust
Manchester, M13 9WL
United Kingdom
Northumberland, Tyne & Wear NHS Foundation Trust of St. Nicholas Hospital
Newcastle upon Tyne, NE3 3XT
United Kingdom
St. Andrews Healthcare
Northampton, NN1 5DG
United Kingdom
Oxford Radcliffe Hospitals
Oxford, OX3 9DU
United Kingdom
Plymouth Hospitals NHS Trust
Plymouth, PL6 8BX
United Kingdom
Poole Hospital
Poole, BH15 2JB
United Kingdom
Royal Berkshire NHS Foundation Trust
Reading, RG1 5AN
United Kingdom
Sheffield Children's NHS Foundation Trust
Sheffield, S10 2TH
United Kingdom
University Hospital Southampton
Southampton, SO16 6YD
United Kingdom
North Staffordshire Combined Healthcare NHS Trust
Stoke-on-Trent, ST4 8HH
United Kingdom
Avon and Wiltshire Mental Health Partnership
Swindon, SN3 6BW
United Kingdom