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

Status: Recruiting
Location: See all (178) locations...
Study Type: Observational [Patient Registry]
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 20,000 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.

Eligibility
Participation Requirements
Sex: All
Minimum Age: 18
Healthy Volunteers: Accepts Healthy Volunteers
View:

• 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.

Locations
United States
Alabama
University of Alabama
Recruiting
Birmingham
Arizona
St. Joseph's Hospital and Medical Center
Recruiting
Phoenix
California
University of California - Irvine Medical Center
Recruiting
Irvine
Loma Linda Medical Center
Terminated
Loma Linda
University of California - Los Angeles
Recruiting
Los Angeles
University of California - Davis
Recruiting
Sacramento
University of California - San Diego
Recruiting
San Diego
University of California - San Francisco
Recruiting
San Francisco
Colorado
Cenexel Rocky Mountain Clinical Research, LLC
Recruiting
Englewood
Connecticut
University of Connecticut
Recruiting
Farmington
Washington, D.c.
Georgetown University
Recruiting
Washington
Florida
University of Florida Board of Trustees
Recruiting
Gainesville
University of South Florida, HDSA Center of Excellence at USF
Recruiting
Tampa
Georgia
Emory University, Wesley Woods Health Center
Recruiting
Atlanta
Georgia Health Sciences University
Terminated
Augusta
Iowa
University of Iowa
Recruiting
Iowa City
Illinois
Rush University Medical Center
Recruiting
Chicago
University of Chicago
Terminated
Chicago
University of Illinois College of Medicine at Rockford
Terminated
Rockford
Indiana
Indiana University
Recruiting
Indianapolis
Kansas
University of Kansas Medical Center
Recruiting
Kansas City
Hereditary Neurological Disease Center
Recruiting
Wichita
Kentucky
University of Louisville
Recruiting
Louisville
Massachusetts
Beth Israel Deaconess Medical Center
Recruiting
Boston
Boston University Medical Center
Recruiting
Boston
Maryland
Johns Hopkins University
Recruiting
Baltimore
University of Maryland School of Medicine
Withdrawn
Baltimore
Michigan
University of Michigan
Recruiting
Ann Arbor
Wayne State University
Withdrawn
Detroit
Minnesota
Hennepin County Medical Center
Recruiting
Minneapolis
Missouri
Washington University in St. Louis
Recruiting
Saint Louis
North Carolina
Duke University
Recruiting
Durham
Wake Forest School of Medicine
Recruiting
Winston-salem
North Dakota
Sanford Health
Recruiting
Fargo
Nebraska
University of Nebraska Medical Center
Recruiting
Omaha
New Jersey
Cooper University Hospital
Active, not recruiting
Camden
Rutgers, the State University of New Jersey
Recruiting
New Brunswick
Nevada
Cleveland Clinic - Las Vegas
Recruiting
Las Vegas
New York
Albany Medical College
Recruiting
Albany
Columbia University
Recruiting
New York
University of Rochester
Recruiting
Rochester
Ohio
University of Cincinatti
Recruiting
Cincinnati
Cleveland Clinic
Recruiting
Cleveland
The Ohio State University
Recruiting
Columbus
Pennsylvania
University of Pennsylvania
Recruiting
Philadelphia
University of Pittsburgh
Recruiting
Pittsburgh
South Carolina
University of South Carolina
Recruiting
Columbia
Tennessee
University of Tennessee Health Science Center
Terminated
Memphis
Vanderbilt University Medical Center
Recruiting
Nashville
Texas
Baylor College of Medicine
Recruiting
Houston
University of Texas Health Science Center
Recruiting
Houston
Utah
University of Utah
Recruiting
Salt Lake City
Virginia
University of Virginia
Recruiting
Charlottesville
Virginia Commonwealth University Parkinson's and Movement Disorders Center
Recruiting
Henrico
Vermont
University of Vermont
Recruiting
Burlington
Washington
Booth Gardner Parkinson's Care Center (Evergreen Health)
Recruiting
Kirkland
University of Washington Medical Center
Recruiting
Seattle
Other Locations
Argentina
Instituto de Neurociencias Buenos Aires (INEBA)
Recruiting
Buenos Aires
Australia
Monash University
Recruiting
Melbourne
University of Melbourne, Royal Melbourne Hospital
Recruiting
Parkville
The Neurosciences Unit - North Metropolitan Hospital
Recruiting
Perth
Westmead Hospital
Recruiting
Westmead
Austria
Universitatsklinik Innsbruck
Recruiting
Innsbruck
Belgium
Bruxelles - Erasme
Recruiting
Bruxelles
Institut de Pathologie et de Génétique (IPG)
Recruiting
Charleroi
University Hospitals Leuven
Recruiting
Leuven
Hôpital du Beau Vallon ASBL
Recruiting
Saint-servais
Canada
University of Calgary, Movement Disorders Program
Recruiting
Calgary
University of Alberta (Glenrose)
Terminated
Edmonton
University of Alberta Hospital in Edmonton
Recruiting
Edmonton
Nova Scotia Health Authority
Recruiting
Halifax
Centre for Movement Disorders
Recruiting
Markham
CHUM Hospital of Notre Dame
Recruiting
Montreal
The Ottawa Hospital
Recruiting
Ottawa
North York General Hospital
Recruiting
Toronto
University of British Columbia
Recruiting
Vancouver
Chile
CETRAM
Recruiting
Santiago
Colombia
Servicios Médicos MS, Clínica de Marly
Recruiting
Bogotá
Universidad de Antioquia, Grupo de Neurociencias
Recruiting
Medellín
Denmark
University Hospital of Aarhus
Recruiting
Aarhus
University Hospital of Copenhagen
Recruiting
Copenhagen
University Hospital of Odense
Recruiting
Odense
France
CHU Amiens-Picardie
Recruiting
Amiens
CHU Angers, Centre de Référence Maladies Neurogénétiques
Recruiting
Angers
Bordeaux - Huntington Disease competencies center
Recruiting
Bordeaux
CHU Gabriel-Montpied
Recruiting
Clermont-ferrand
Hôpital Henri Mondor, Centre d'Investigation Clinique
Recruiting
Créteil
Lille-Amiens - Huntington Disease Constituent site
Recruiting
Lille Cedex
Hôpital La Timone
Recruiting
Marseille
CHU Montpellier
Recruiting
Montpellier
Institut du Cerveau et de la Moelle Epinière
Recruiting
Paris
Hôpitaux Universitaires de Strasbourg Hôpital de Hautepierre-Service de Neurologie
Recruiting
Strasbourg
Hôpital Purpan, Centre d'Investigation Clinique
Recruiting
Toulouse
Germany
University Hospital Aachen
Recruiting
Aachen
University of Berlin
Recruiting
Berlin
St. Josef und St. Elisabeth Hospital
Recruiting
Bochum
University Hospital Carl Gustav Carus Dresden
Recruiting
Dresden
University Hospital Erlangen
Recruiting
Erlangen
University Medical Center Freiburg
Recruiting
Freiburg
Paracelsus Elena Klinik Kassel
Recruiting
Kassel
University Hospital Schleswig-Holstein
Recruiting
Lübeck
University Hospital Giessen and Marburg
Terminated
Marburg
Technical University of Munich
Recruiting
Munich
George-Huntington-Institut GmbH
Recruiting
Münster
kbo-Isar-Amper-Klinikum Taufkirchen (Vils)
Recruiting
Taufkirchen
University Hopsital of Ulm
Recruiting
Ulm
University Hospital of Wuerzburg
Recruiting
Würzburg
Ireland
Beaumont Hospital
Recruiting
Dublin 9
Italy
Bari Policlinico General Hospital
Recruiting
Bari
IRCCS Istituto delle Scienze Neurologiche di Bologna
Recruiting
Bologna
Università degli Studi di Genova (DINOGMI)
Recruiting
Genoa
Fondazione IRCCS Istituto Neurologico Carlo Besta - Genetics
Recruiting
Milan
Fondazione IRCCS Istituto Neurologico Carlo Besta - Neurology
Terminated
Milan
University of Naples
Recruiting
Napoli
Azienda Ospedaliera Sant'Andrea
Recruiting
Rome
Lega Italiana Ricerca Huntington (LIRH)
Recruiting
Rome
Università Cattolica del Sacro Cuore
Recruiting
Rome
Netherlands
University Medical Center Groningen
Recruiting
Groningen
Leiden University Medical Centre
Recruiting
Leiden
Clinical Trial Center Maastricht B.V.
Recruiting
Maastricht
New Zealand
Auckland City Hospital
Recruiting
Auckland
New Zealand Brain Research Institute at University of Otago
Recruiting
Christchurch
Wellington Hospital
Recruiting
Wellington
Poland
Copernicus Podmiotem Leczniczym sp. z o.o.
Recruiting
Gdansk
Krakowska Akademia Neurologii Sp. z o.o
Recruiting
Katowice
Krakow - Krakowska Akademia Neurologii
Recruiting
Kraków
Solumed Centrum Medyczne
Terminated
Poznan
Institute of Psychiatry and Neurology, Warsaw
Recruiting
Warsaw
Medical University of Warsaw
Terminated
Warsaw
Portugal
Hospital Prof Doutor Fernando Fonseca
Recruiting
Amadora
Hospital Universitário de Coimbra
Not yet recruiting
Coimbra
Central Lisbon Hospital
Terminated
Lisbon
Hospital de Santa Maria / Instituto de Medicina Molecular
Recruiting
Lisbon
Hospital Universitário de São João
Not yet recruiting
Porto
Spain
Hospital Infanta Cristina, Badajoz
Recruiting
Badajoz
Hospital de Cruces
Recruiting
Barakaldo
Fundacion Clinic per a La Recerca Biomèdica
Recruiting
Barcelona
Hospital de la Santa Creu i Sant Pau
Recruiting
Barcelona
Hospital Mare de Déu de la Mercè
Recruiting
Barcelona
Hospital Universitari de Bellvitge
Recruiting
Barcelona,
Hospital Universitario de Burgos
Recruiting
Burgos
Fundación Jiménez Díaz
Recruiting
Madrid
Hospital Universitario Ramón y Cajal
Recruiting
Madrid
Hospital Son Espases
Recruiting
Palma De Mallorca
Complejo Hospitalario de Navarra
Recruiting
Pamplona
Fundacion Hospital Universitario La Fe
Recruiting
Valencia
Switzerland
Siloah AG
Recruiting
Gümligen
University Hospital Zurich
Recruiting
Zürich
United Kingdom
University of Aberdeen
Recruiting
Aberdeen
Birmingham and Solihull Mental Health NHS Foundation Trust
Recruiting
Birmingham
North Bristol NHS Trust
Recruiting
Bristol
University of Cambridge
Recruiting
Cambridge
Cardiff University
Recruiting
Cardiff
Tayside Health Board
Recruiting
Dundee
Lothian Health Board
Recruiting
Edinburgh
Royal Devon and Exeter NHS Foundation Trust
Recruiting
Exeter
Greater Glasgow Health Board
Recruiting
Glasgow
Ayrshire Central Hospital
Terminated
Kilmarnock
Fife Health Board
Recruiting
Kirkcaldy
NHS Forth Valley
Terminated
Larbert
Leeds Teaching Hospitals
Recruiting
Leeds
The Walton Centre
Recruiting
Liverpool
Guy's and St. Thomas's NHS Foundation Trust
Recruiting
London
St. George's Hospital
Recruiting
London
University College of London
Recruiting
London
Central Manchester University Hospitals NHS Foundation Trust
Recruiting
Manchester
Leicestershire Partnership
Recruiting
Narborough
Northumberland, Tyne & Wear NHS Foundation Trust of St. Nicholas Hospital
Recruiting
Newcastle-upon-tyne
St. Andrews Healthcare
Terminated
Northampton
Oxford Radcliffe Hospitals
Recruiting
Oxford
Plymouth Hospitals NHS Trust
Recruiting
Plymouth
Poole Hospital
Recruiting
Poole
Royal Berkshire NHS Foundation Trust
Recruiting
Reading
Sheffield Children's NHS Foundation Trust
Recruiting
Sheffield
University Hospital Southampton
Recruiting
Southampton
North Staffordshire Combined Healthcare NHS Trust
Recruiting
Stoke-on-trent
Avon and Wiltshire Mental Health Partnership
Active, not recruiting
Swindon
Betsi Cadwaladr University Health Board
Recruiting
Wrexham
Contact Information
Primary
Noopur Modi
Info@Enroll-HD.org
Backup
Elena Ngangom
Time Frame
Start Date: July 2012
Estimated Completion Date: January 2062
Participants
Target number of participants: 20000
Authors
Esteban Muñoz, Anwar Ahmad, Cristina Costa, José LL Sendón, Pedro G Ruiz-Espiga, Reza Kiana, Sarah Perez, Juan C Gomez, Matilde Calopa Garriga, Rachel Zombor, Raymund AC Roos, Paola Soliveri, Sara Perez, Frances Walker, H.P.H. Kremer, Wai-Lun Alan Fung, Richard Dubinksy, Marie-Saint Hillaire, Win van den Berghe, Shnehal Pater, David Goudie, Daniel Claassen, Paolo Moretti, Elan Louis, Anwar Ahmed, Glenn Konopaske, Victor Sung, Madaline Harrison, Kathrin Lafaver, Gail Kang, Ryan Walsh, Christian Lachner, Neal Hermanowicz, Amy Colcher, Un Jung Kang, Nicki Niemann, Rajeev Kumar, Era Hanspal, Mark Stacy, Kathleen Shannon, Deborah A. Hall, Brent Bluett, Aaron Lasker, Joel Perlmutter, William Mallonee, Jody Corey-Bloom, Thomas Bird, Martha Nance, Frederick Marshall, Sarah Janicki, David Standaert, Mayur Pandya, Ali Samii, Rohit Dhall, Frederick Nucifora, Michael Geschwind, Juan Sanchez-Ramos, Suman Jayadev, Burton Scott, Kevin Biglan, Eric Molho, Karen Marder, Sandra Kostyk, Stewart Factor, Daniel Schneider, Adam Rosenblatt, Claudia Testa, Noelle Carlozzi, MIROSLAV CUTURIC, Samuel Frank, Jane Paulsen, Sharon Sha, Adam Margolius, Anna Morenkova, Andrew Duker, David Shprecher, Pietro Mazzoni, Joseph Jankovic, Jennifer Goldman, Machteld Hillen, James Boyd, John Morgan, Zoltan Mari, Karen Anderson, Nikolaus McFarland, Hubert Fernandez, Tao Xie, Adolfo Ramirez-Zamora, Edwin George, Pinky Agarwal, Valerie Suski, Vicki Wheelock, Amy Hellman, Sandeep Thakkar, Tanya Harlow, Kevin Manning, Adam Boxer, Erin Furr-Stimming, Victoria Holiday, Susan Criswell, Yvette Bordelon, David Moser, Srivadee Oravivattanakul, Christopher James, Alexandra Sasha Duffy, Alan Fung, David Bourke, José Luis López-Sendón Moreno, Jonathan Berg, Gabriel Jose Arango Uribe, Ranjit Ranawaya, William Fernandez, John Adams, Andrew Churchyard, Lamia GUETTAT, Randi Jones, María Teresa Montojo, Witold Soltan, Annie Killoran, Bradleigh Hayhow, Pierre Krystkowiak, Kathrin Reetz, Zacharias Kohl, Oliver Quarrell, Alisdair McNeill, Rupert Noad, Adolf Weindl, Claudia Trenkwalder, Alexandra Durr, Peter Foley, Elizabeth Coulthard, Kai Boelmans, Nayana Lahiri, Alison Kraus, Michael Armanyous, Michel Rijntjes, Elvina Chu, Alexander Münchau, Carsten Saft, Michael Orth, Christopher Kipps, Thorsten Odorfer, Björn Falkenburger, Sarah Tabrizi, Cecilia Marelli, Ralf Marquard, Christophe Verny, Emma Hobson, Josef Priller, Clémence Simonin, Alexander Storch, Johannes Schiefer, Christoph Schrader, George El-Nimr, Stephan Klebe, Timothy Harrower, Thomasin Andrews, Alberto Salmoiraghi, Christine Tranchant, Christian Neumann, Anne Rosser, Ralf Reilmann, Andrea Nemeth, Jürgen Winkler, David Craufurd, Bernhard G Landwehrmeyer, Rhys Davies, Andreas Hermann, Gareth Thomas, Suresh Komati, Hans Jung, Cyril Goizet, Mélissa Tir, Simone Meier, Ana Oliveira, Mary Porteous, Maria Ramos, Jesús Ruíz Idiago, Pinky Argarwal, Marie Saint-Hillaire, Simon Rubidge, Carmen D Herrera, Michel Panisset, Pedro Chana, Katrin Buerk, Monika Rudzinska, Giovanni Ristori, Christine Verellen-Dumoulin, Sarah Furtado, koldo Berganzo, Jessica Tate, Lene Wermuth, Stuart Ritchie, Niall Pender, Naomi Salins, Alzbeta Mühlbäck, Carrolyn Orr, Fabienne Calvas, Justyna Sarna, Pedro Gonzalez-Alegre, Peter Panegyres, Jee Bang, Anette T Moller, Matthias Dose, Carmen Peiró, Richard Roxburgh, Mayke Oosterloo, Grzegorz Witkowski, Leonor Correia Guedes, Susanne de Bot, Brian Long, Tim Anderson, Kerrie Schoffer, Wayne Martin, Morten Blaabjerg, Daniel Zielonka, Mark Guttman, Sylvain Chouinard, Ines Legarda, Marina de Tommaso, Oksana Suchowersky, Giuseppe De Michele, Emilia Gatto, Monika Rudzińska-Bar, Zosia Miedzybrodzka, Esther Cubo, Ana Marques, Shaikab Khan, Paola Mandich, Giovanni Abbruzzese, Jean-Philippe Azulay, Lynn Raymond, Wim Vandenberghe, Klaus Seppi, Joaquim Ferreira, Erin Furr Stimming, Anita Goh, Cristina Januário, Mark LeDoux, Ana-Raquel Marques, Lorenzo Nanetti, Marguerite Wieler, Pietro Cortelli, Jaime Kulisevsky, Anne-Catherine Bachoud-Levi, Hugh Rickards, Ferdinando Squitieri, Raymund Roos, Piotr Janik, Meriel McEntagart, Caterina Mariotti, Julie Stout, John Burn, Roger Barker, Lena E Hjermind, Paolo Calabresi, Jean-Marc Burgunder, Anna Rita Bentivoglio, Frédéric Supiot, Richard Armstrong, Tiago Mestre, Jorgen E Nielsen, Clement Loy, Mitch King, Juan Carlos Gómez Esteban, Susan Perlman, Dzintra Clemins, Christine Christine, Khashayer Dashtipour, Camila Aquino, Ana Calado, Tim Johnston, David Crauford, Terry Tempkin, Julia Middleton, Francisco Lopera, Lesley Gowers, Christopher Ross
Sponsors
Leads: CHDI Foundation, Inc.

This content was sourced from clinicaltrials.gov

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