AzTrials
AzTrials

Huntington DiseaseREGISTRYNCT01590589

REGISTRY - an Observational Study of the European Huntington's Disease Network (EHDN)

An observational study of Huntington Disease and Huntington's Disease, run by European Huntington's Disease Network at 140 sites in 17 countries.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
Search all trials

Trial summary

This is a multi-centre, multi-national, prospective, observational study of Huntington's disease (HD) with a control group of volunteers to: obtain natural history data on many HD mutation carriers and individuals who are part of an HD family relate phenotypical characteristics (genetic modifiers / wet and dry… Read more about this study

Who is it for?
Any ageHealthy volunteers can take part
Conditions the study is for
Huntington Disease, Huntington's Disease
How many people
10,000 participants
Where
140 sitesin 17 countries
Study dates
Jun 2004to 30 Jun 2017
Phase
Observational
Are there results?
None posted in the registry

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 Any age
  • All sexes
  • Healthy volunteers accepted
  • Child, Adult, Older adult

Study population: 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)

Who may be able to join

  • The following individuals may be eligible to participate
  • Individuals, confirmed HD mutation carrier
  • Manifest HD, without mutation (CAG) testing
  • HD family member at-risk, without CAG testing
  • HD family member, non-HD mutation carrier
  • REGISTRY-CONTROL participants: companion/individual without HD history
  • REGISTRY-COMPANION (any of the above).

Who cannot join

  • Participants who are unable to understand the study protocol or unable to give informed consent, and have no legal representative.
  • Participants with choreic movement disorder other than HD. (EHDN provides a Registry-like tool to record findings in patients affected with choreatic movement disorders other than HD under the label "Neuroacanthocytosis"; www.euro-hd.net/html/na/registry).

Trial locations and contacts

140 sites in 17 countries.

140 sites in 17 countries

United Kingdom30 sites

  • Clinical Genetics Centre, Ground Floor, Ashgrove House

    Aberdeen, AB25 2ZA

  • The Barberry Centre, Dept. of Psychiatry

    Birmingham, B15 2FG

  • Blandford Hospital

    Blandford Forum, DT11 7DD

  • Frenchay Hospital, Neurology Dept.

    Bristol, BS16 1LE

  • Cambridge Centre for Brain Repair, Forvie Site

    Cambridge, CB2 0PY

  • Cardiff University, Life Sciences Building

    Cardiff, CF10 3US

  • Ninewells Hospital and Medical School, Human Genetics Unit

    Dundee, DD1 9SY

  • Molecular Medicine Centre, Western General Hospital, Dept. of Clinical Genetics

    Edinburgh, EH4 2XU

  • Royal Devon and Exeter Foundation Trust Hospital, Department of Neurology

    Exeter, EX2 5DW

  • Queen Margaret Hospital

    Fife, KY12 OSU

  • Scottish Huntington Association, Units 105/106

    Glasgow, G40 2DD

  • Gloucestershire Royal Hospital, Neurology Dept.

    Gloucester

  • Chapel Allerton Hospital, Yorkshire Regional Genetics Service

    Hull, LS7 4SA

  • Chapel Allerton Hospital

    Leeds, LS7 4SA

  • Leicestershire Partnership NHS Trust, EMD South School, OSL house

    Leicester, LE19 1XU

  • The Walton Centre for Neurology and Neurosurgery

    Liverpool, L9 7LJ

  • Guy's Hospital, Dept. of Neurology

    London, SE1 9RT

  • The Royal Hospital for Neuro-disability, Research and Development

    London, SW15 3SW

  • St George's Hospital Medical School, South West Thames Regional Genetics Unit

    London, SW17 0RE

  • National Hospital for Neurology and Neurosurgery, Dept. for Neurology

    London, WC1N 3BG

  • University of Manchester, Genetic Medicine, St. Mary's Hospital

    Manchester, M13 9WL

  • Institute of Human Genetics, International Centre for Life

    Newcastle upon Tyne, NE1 3BZ

  • Churchill Hospital, Dept. of Clinical Genetics

    Oxford, OX3 7LJ

  • Derriford Hospital, Dept. of Clinical Neuropsychology

    Plymouth, PL6 8AH

  • Poole Hospital Foundation Trust, Brain Injury Service

    Poole, BH15 2JB

  • Lancashire Teaching Hospitals NHS Foundation Trust, Neurosciences Directorate, Royal Preston Hospital

    Preston, PR2 9HT

  • Sheffield Children's Hospital, Dept. of Clinical Genetics

    Sheffield, S10 2TH

  • Southampton General Hospital and University of Southampton, Neurology / Wellcome Trust Clinical Research Facility

    Southampton, SO16 6YD

  • Bucknall Hospital, Neuropsychiatry Service

    Stoke-on-Trent, ST2 8LD

  • Victoria Centre

    Swindon, SN3 6BW

Other trials in United Kingdom

Spain23 sites

  • Complejo Hospitalario Universitario de Albacete, Neurología

    Albacete, 2006

  • Hospital Infanta Cristina, Neurología

    Badajoz, 6080

  • Hospital Vall d'Hebrón, Neurología, 3ª planta, consultas externas

    Barcelona, 8035

  • Hospital Clínic i Provincial, Neurología

    Barcelona, 8036

  • Hospital Bellvitge, Neurología

    Barcelona, 8907

  • Hospital General Yagüe, Neurology

    Burgos, 9006

  • Hospital Puerta del Mar, Neurología

    Cadiz, 11009

  • Centro Ramón y Cajal, Neurología

    Madrid, 28034

  • Fundación Jiménez Díaz, Neurology

    Madrid, 28040

  • Hospital Clínico de Madrid, Servicio de Neurología

    Madrid, 28044

  • Hospital de Fuenlabrada, Neurology

    Madrid, 28942

  • Hospital Virgen de la Arrixaca, Neurology

    Murcia, 30120

  • Hospital Central de Oviedo, Neurología

    Oviedo

  • Hospital Son Dureta, Neurology

    Palma de Mallorca, 7014

  • Hospital Virgen del Camino, Medical Genetics

    Pamplona, 31008

  • Hospital Donostia. Universidad del Pais Vasco, Neurociencias

    San Sebastián, 20014

  • Hospital General de Segovia, Neurología

    Segovia, 40001

  • Hospital Universitario Virgen del Rocío, Servicio de Neurología

    Seville, 41013

  • Hospital Virgen Macarena, Neurología

    Seville

  • Hospital Universitario Mutua de Terrassa, Neurologia - Investigación

    Terrassa - Barcelona, 8221

  • Hospital Virgen de la Salud, Neurology

    Toledo, 45004

  • Hospital La Fe, Consultas Externas de Neurología

    Valencia, 46026

  • Hospital Clinico Universario, Department of Neurology

    Zaragoza, 50009

Other trials in Spain

Germany17 sites

  • Universitätsklinikum Aachen, Neurologische Klinik

    Aachen, 52074

  • Charité - Universitätsmedizin Berlin, Klinik und Poliklinik für Neurologie, Klinik für Psychiatrie und Psychotherapie

    Berlin, 10117

  • Ruhruniversität Bochum, Neurologie

    Bochum, 44791

  • Reha-Zentrum Dinslaken im Gesundheitszentrum Lang, Tagesklinik

    Dinslaken, 46539

  • Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Klinik und Poliklinik für Neurologie

    Dresden, 01307

  • Universtität Erlangen, Abteilung für Molekulare Neurologie

    Erlangen, 91054

  • Universitätsklinikum Freiburg, Neurologie

    Freiburg im Breisgau, 79106

  • Universitätsklinikum Hamburg-Eppendorf, Neurologische Abteilung

    Hamburg, 20246

  • Neurologische Klinik mit Klinischer Neurophysiologie, Medizinische Hochschule Hannover

    Hanover, 30625

  • Psychatrium Gruppe AöR, Haus 2/1

    Heiligenhafen, 23774

  • Schwerpunktpraxis Huntington, Neurologie-Psychiatrie

    Itzehoe, 25524

  • Praxis

    Marburg, 35039

  • Universität Marburg, Neurologie

    Marburg, 35039

  • Technische Universität München, Abteilung Neurologie

    München, 81675

  • Universitätsklinikum Münster, Klinik und Poliklinik für Neurologie

    Münster, 48129

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

    Taufkirchen, 84416

  • University Hospital of Ulm, Dept. of Neurology

    Ulm, 89081

Other trials in Germany

Italy12 sites

  • University of Bari, Dept. of Neurological and Psychiatric Sciences

    Bari, 70124

  • Università di Bologna, Dip. di Scienze Neurologiche - Clinica Neurologica

    Bologna, 40123

  • Azienda Ospedaliera Spedali Civili di Brescia, Clinica Neurologica

    Brescia, 25125

  • University of Florence, Dip. di Scienze Neurologiche e Psichiatriche

    Florence, 50134

  • Università di Genova, Dept. of Neurosciences

    Genova, 16132

  • Fondazione IRCCS Istituto Neruologico Carlo Besta, SOSD Genetics of Neurodegenerative and Metabolic Diseases

    Milan, 20133

  • Fondazione IRCCS Istituto Neurologico Carlo Besta, I Neurologia

    Milan, 20133

  • Università di Napoli Federico II, Dip. Scienze Neurologiche Edificio 17

    Naples, 80131

  • Azienda Ospedaliera Universitarie Pisana, Dip. di Neuroscienze - UO Neurologia

    Pisa, 56126

  • IRCCS Neuromed, U.O. Neurogenetica

    Pozzilli (IS), 86077

  • Azienda Ospedaliera S. Andrea, UOC Neurologia e Centro Neurologico Terapie Sperimentali CENTERS

    Rome, 00139

  • Università Cattolica del Sacro Cuore "A.Gemelli", Istituto di Neurologia / CNR, Istituto di Farmacologia Traslazionale

    Rome, 00168

Other trials in Italy

France11 sites

  • CHU d'Amiens - Hôpital Nord, Service de Neurologie

    Amiens, 80054

  • CHU d'Angers, Service de Neurologie Charcot

    Angers, 49933

  • Hôpital Pellegrin, Service de Génétique Médicale (ESF 3e étage)

    Bordeaux, 33076

  • HU Clermont-Ferrand - Hôpital Gabriel Montpied, Service de Neurologie

    Clermont-Ferrand, 63003

  • Hôpital Henri Mondor, Service de Neurologie

    Créteil, 94010

  • Clinique Neurologique Hôpital Roger Salengro CHRU, Neurologie et Pathologie du Mouvement

    Lille, 59037

  • CHU La Timone, Service de Neurologie (9e étage)

    Marseille, 13385

  • Hôpital La Pitié Salpétrière, Génétique & Inserm U679

    Paris, 75651

  • CHU Rouen Charles Nicolle, Service de Neurologie

    Rouen, 76031

  • Hôpital Civil, Service de Neurologie

    Strasbourg, 67091

  • Hôpital Purpan, INSERM U825, Pôle Neurosciences

    Toulouse, 31059

Other trials in France

Finland8 sites

  • The Family Federation of Finland Väestöliitto, Department of Medical Genetics

    Helsinki, FIN-00101

  • Helsinki University Hospital, Dept. of Neurology

    HUS, 29

  • Kuopio University Hospital, Neurology

    Kuopio, 1777 PL

  • Ålands Hälso- och Sjukvård, Långvårdsenheten

    Mariehamn, AX-22111

  • Oulu University Hospital (OUH), Dept. of Neurology

    Oulu, FIN-90220

  • Suomen Terveystalo

    Tampere, 33100

  • Turku University Hospital, Dept. of Neurology

    Turku, 20521

  • The Finnish Parkinson Association, Suvituuli

    Turku, 20900

Other trials in Finland

Portugal7 sites

  • Hospital de Coimbra, Neurology Dept.

    Coimbra, 3004 561

  • Hospital dos Capuchos, Centro Hospitalar Lisboa Central, Neurology Dept.

    Lisbon, 1169-050

  • Hospital de Santa Maria, Centro de Estudos Egas Moniz, Neurology Dept.

    Lisbon, 1649-028

  • Hospital Fernando Fonseca, Neurology Dept.

    Lisbon, 2700

  • Hospital de São João, Neurology Dept.

    Porto, 4000

  • Hospital Geral de Santo António, Neurology Dept.

    Porto, 4000

  • Centro Hospitalar de Trás-os-Montes e Alto Douro, Neurology Dept.

    Vila Real, 5000

Other trials in Portugal

Poland6 sites

  • Specialistic Hospital in Gdansk, Dept. of Neurology

    Gdansk, 80-462

  • Medical University of Silesia, Dept. of Neurology

    Katowice, 40-752

  • Krakowska Akademia Neurologii

    Krakow, 31-530

  • Poznan University of Medical Sciences, Dept. of Social Medicine

    Poznan, 60-806

  • Medical University of Warsaw, Dept. of Neurology

    Warsaw, 02-097

  • Institute of Psychiatry and Neurology, First Dept. of Neurology

    Warsaw, 02-957

Other trials in Poland

Sweden6 sites

  • Sahlgren University Hospital, Dept. of Clinical Genetics

    Gothenburg, 41345

  • Skåne Universitetssjukhus, Neurologiska kliniken

    Lund, 22185

  • Neuroenheten Utsikten

    Stockholm, 11 691

  • Karolinska University Hospital - Huddinge Division, Neurology

    Stockholm, 141 86

  • Norrlands Universitet Sjukhus, Dept. of Neurology

    Umeå, 901 85

  • Uppsala University Hospital, Neurology

    Uppsala, 751 85

Other trials in Sweden

Netherlands4 sites

  • Medisch Spectrum Twente, Dept. of Neurology

    Enschede, 7500 KA

  • UMC Groningen, Neurology

    Groningen, 9700 RB

  • Leiden University Medical Centre (LUMC), Neurology K5-Q

    Leiden, 2300 RC

  • MUMC, Dept. Neurology

    Maastricht, 6202 AZ

Other trials in Netherlands

Norway4 sites

  • NKS Olaviken Alderpsykiatriske sykehus, Poliklinikk og Huntington Klinikk

    Bergen, 5009

  • Rikshospitalet, Dept. of Medical Genetics

    Oslo, 27

  • Ulleval University Hospital, Medical Genetics

    Oslo, 407

  • St. Olavs Hospital HF, Neurology

    Trondheim, 7006

Other trials in Norway

Belgium3 sites

  • UCL-St Luc, Centre de génétique humaine

    Brussels, 1200

  • Institute of Pathology and Genetics (IPG)

    Gosselies, B-6041

  • Universitair Ziekenhuis Gasthuisberg, Dienst Neurologie

    Leuven, 3000

Other trials in Belgium

Switzerland3 sites

  • Neurologische Klinik des Inselspitals, Praxis

    Bern, 3006

  • CHUV - Centre Hospitalier Universitaire Vaudois, Département de Neurologie

    Lausanne, 1011

  • University Hospital Zurich, Dept. of Neurology

    Zurich, 8091

Other trials in Switzerland

Austria2 sites

  • Universitätsklinik für Psychiatrie, Neuropsychiatrische Ambulanz

    Graz, 8036

  • Universitätsklinik Innsbruck, Neurologie

    Innsbruck, 6020

Other trials in Austria

Czechia2 sites

  • Fakultní nemocnice Olomouc, Neurologická klinika

    Olomouc, 772 00

  • Centrum extrapyramidových onemocnění, Neurologická klinika, 1. LFUK

    Prague, 12000

Other trials in Czechia

Denmark1 site

  • University Hospital of Copenhagen - Rigshospitalet, Dept. of Neurology

    Copenhagen Ø, 2100

Other trials in Denmark

Russia1 site

  • Huntington's Disease Society of Russia

    Moscow, 125367

Other trials in Russia

About this study

This is a multi-centre, multi-national, prospective, observational study of Huntington's disease (HD) with a control group of volunteers to:

  • obtain natural history data on many HD mutation carriers and individuals who are part of an HD family
  • relate phenotypical characteristics (genetic modifiers / wet and dry biomarkers)
  • expedite identification and recruitment of participants for clinical trials
  • develop and validate sensitive and reliable outcome measures for detecting onset and change over the natural course of premanifest and manifest HD which may also be potential outcome measures for use in future clinical trials and clinical care
  • plan for future research studies
Read the detailed description

REGISTRY integrates prospectively and systematically collected clinical research data (e.g. phenotypical clinical features, family history, demographical characteristics) with access to biological specimens (e.g. blood, urine) obtained 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).

REGISTRY is an open-ended study and eligible subjects are assessed at annual study visits on the phenotypical characteristics of HD regardless of whether they display clinical symptoms and signs of the disease and of individuals who are part of an HD family (irrespective of their mutation carrier status). At each study visit, general clinical, motor function, behavior, cognitive, Health Economics, Quality of Life assessments are administered. In addition, participants are given the option to consent to the donation of biosamples for the purposes of mutation (CAG repeat length) testing and for research to identify biological modifiers and markers of HD. Biological specimens and phenotypical data are made available to qualified scientists whose projects are reviewed and approved by the Scientific and Bioethical Advisory Committee (SBAC) of EHDN. Successful applicants agree to accept the EHDN policies surrounding the use of the data/materials provided and publication of results (see data sharing and publication policies of EHDN, attached). Research projects should aim to advance scientific knowledge towards establishing clinically effective treatments that delay onset and/or slow the progression of the disease.

Keywords
Huntington Disease, European HD Network, Cohort, REGISTRY, EHDN
Medical subject headings
Huntington Disease

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

Study groups in NCT01590589
Study groupRoleWhat they receive
REGISTRY participantsIndividuals * with manifest HD * unaffected but known to carry the HD mutation * unaffected but at risk of carrying the HD mutation * from HD families known not to carry the HD mutation * from outside HD families acting as control research participants (e.g., spouses)

What is being measured

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

  1. Phenotypical characteristics of HD

    The goal of the project is to collect longitudinal data on the phenotypical characteristics of HD gene mutation carriers.

    Measured: 13 years

Timeline

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

  1. First posted3 May 2012 (estimated)
  2. Study startJun 2004
  3. Primary completion30 Jun 2017
  4. Study completion30 Jun 2017

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
Cohort
Time perspective
Other
Enrolment
10,000 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT01590589
Sponsor's protocol ID
REGISTRY 3.0
Acronym
REGISTRY
Status last verified
Sep 2017
First submitted
22 Mar 2012
Last updated
15 Sep 2017
Results posted
No
Data monitoring committee
No

Publications

  • Rickards H, De Souza J, van Walsem M, van Duijn E, Simpson SA, Squitieri F, Landwehrmeyer B; European Huntington's Disease Network. Factor analysis of behavioural symptoms in Huntington's disease. J Neurol Neurosurg Psychiatry. 2011 Apr;82(4):411-2. doi: 10.1136/jnnp.2009.181149. Epub 2010 Apr 14.

    PubMed 20392980

  • Orth M, Handley OJ, Schwenke C, Dunnett SB, Craufurd D, Ho AK, Wild E, Tabrizi SJ, Landwehrmeyer GB; Investigators of the European Huntington's Disease Network. Observing Huntington's Disease: the European Huntington's Disease Network's REGISTRY. PLoS Curr. 2010 Sep 28;2:RRN1184. doi: 10.1371/currents.RRN1184.

    PubMed 20890398

  • Orth M; European Huntington's Disease Network; Handley OJ, Schwenke C, Dunnett S, Wild EJ, Tabrizi SJ, Landwehrmeyer GB. Observing Huntington's disease: the European Huntington's Disease Network's REGISTRY. J Neurol Neurosurg Psychiatry. 2011 Dec;82(12):1409-12. doi: 10.1136/jnnp.2010.209668. Epub 2010 Nov 19. No abstract available.

    PubMed 21097549

  • Busse M, Al-Madfai DH, Kenkre J, Landwehrmeyer GB, Bentivoglio A, Rosser A; European Huntington's Disease Network. Utilisation of Healthcare and Associated Services in Huntington's disease: a data mining study. PLoS Curr. 2011 Jan 21;3:RRN1206. doi: 10.1371/currents.RRN1206.

    PubMed 21304753

  • Lopez-Sendon JL, Royuela A, Trigo P, Orth M, Lange H, Reilmann R, Keylock J, Rickards H, Piacentini S, Squitieri F, Landwehrmeyer B, Witjes-Ane MN, Jurgens CK, Roos RA, Abraira V, de Yebenes JG; European HD Network. What is the impact of education on Huntington's disease? Mov Disord. 2011 Jul;26(8):1489-95. doi: 10.1002/mds.23385. Epub 2011 Mar 22.

    PubMed 21432905

  • Ho AK, Hocaoglu MB; European Huntington's Disease Network Quality of Life Working Group. Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective. Clin Genet. 2011 Sep;80(3):235-9. doi: 10.1111/j.1399-0004.2011.01748.x. Epub 2011 Aug 4.

    PubMed 21736564

  • Quarrell OW, Handley O, O'Donovan K, Dumoulin C, Ramos-Arroyo M, Biunno I, Bauer P, Kline M, Landwehrmeyer GB; European Huntington's Disease Network. Discrepancies in reporting the CAG repeat lengths for Huntington's disease. Eur J Hum Genet. 2012 Jan;20(1):20-6. doi: 10.1038/ejhg.2011.136. Epub 2011 Aug 3.

    PubMed 21811303

  • Saft C, Epplen JT, Wieczorek S, Landwehrmeyer GB, Roos RA, de Yebenes JG, Dose M, Tabrizi SJ, Craufurd D; REGISTRY Investigators of the European Huntington's Disease Network; Arning L. NMDA receptor gene variations as modifiers in Huntington disease: a replication study. PLoS Curr. 2011 Oct 4;3:RRN1247. doi: 10.1371/currents.RRN1247.

    PubMed 21989477

  • Rickards H, De Souza J, Crooks J, van Walsem MR, van Duijn E, Landwehrmeyer B, Squitieri F, Simpson SA; European Huntington's Disease Network. Discriminant analysis of Beck Depression Inventory and Hamilton Rating Scale for Depression in Huntington's disease. J Neuropsychiatry Clin Neurosci. 2011 Fall;23(4):399-402. doi: 10.1176/jnp.23.4.jnp399.

    PubMed 22231310

  • Lee JM, Ramos EM, Lee JH, Gillis T, Mysore JS, Hayden MR, Warby SC, Morrison P, Nance M, Ross CA, Margolis RL, Squitieri F, Orobello S, Di Donato S, Gomez-Tortosa E, Ayuso C, Suchowersky O, Trent RJ, McCusker E, Novelletto A, Frontali M, Jones R, Ashizawa T, Frank S, Saint-Hilaire MH, Hersch SM, Rosas HD, Lucente D, Harrison MB, Zanko A, Abramson RK, Marder K, Sequeiros J, Paulsen JS; PREDICT-HD study of the Huntington Study Group (HSG); Landwehrmeyer GB; REGISTRY study of the European Huntington's Disease Network; Myers RH; HD-MAPS Study Group; MacDonald ME, Gusella JF; COHORT study of the HSG. CAG repeat expansion in Huntington disease determines age at onset in a fully dominant fashion. Neurology. 2012 Mar 6;78(10):690-5. doi: 10.1212/WNL.0b013e318249f683. Epub 2012 Feb 8.

    PubMed 22323755

  • Henley SM, Ridgway GR, Scahill RI, Kloppel S, Tabrizi SJ, Fox NC, Kassubek J; EHDN Imaging Working Group. Pitfalls in the use of voxel-based morphometry as a biomarker: examples from huntington disease. AJNR Am J Neuroradiol. 2010 Apr;31(4):711-9. doi: 10.3174/ajnr.A1939. Epub 2009 Dec 24.

    PubMed 20037137

  • Aziz NA, Jurgens CK, Landwehrmeyer GB; EHDN Registry Study Group; van Roon-Mom WM, van Ommen GJ, Stijnen T, Roos RA. Normal and mutant HTT interact to affect clinical severity and progression in Huntington disease. Neurology. 2009 Oct 20;73(16):1280-5. doi: 10.1212/WNL.0b013e3181bd1121. Epub 2009 Sep 23.

    PubMed 19776381

  • Stanislawska-Sachadyn A, Krzeminski M, Zielonka D, Krygier M, Zietkiewicz E, Slawek J, Limon J; REGISTRY investigators of the European Huntington's Disease Network (EHDN). Sex contribution to average age at onset of Huntington's disease depends on the number of (CAG)n repeats. Sci Rep. 2024 Jul 8;14(1):15729. doi: 10.1038/s41598-024-64105-5.

    PubMed 38977715

  • Youssov K, Audureau E, Vandendriessche H, Morgado G, Layese R, Goizet C, Verny C, Bourhis ML, Bachoud-Levi AC. The burden of Huntington's disease: A prospective longitudinal study of patient/caregiver pairs. Parkinsonism Relat Disord. 2022 Oct;103:77-84. doi: 10.1016/j.parkreldis.2022.08.023. Epub 2022 Aug 24.

    PubMed 36084356

  • McAllister B, Gusella JF, Landwehrmeyer GB, Lee JM, MacDonald ME, Orth M, Rosser AE, Williams NM, Holmans P, Jones L, Massey TH; REGISTRY Investigators of the European Huntington's Disease Network. Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease. Neurology. 2021 May 11;96(19):e2395-e2406. doi: 10.1212/WNL.0000000000011893. Epub 2021 Mar 25.

    PubMed 33766994

Questions about this trial

What is this clinical trial studying?

An observational study of Huntington Disease and Huntington's Disease, run by European Huntington's Disease Network at 140 sites in 17 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 7 inclusion and 2 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: finished, as of the sponsor's last update on 15 Sep 2017. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 140 sites in United Kingdom, Spain, Germany, Italy, France and 12 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?

The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.

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

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Phenotypical characteristics of HD (time frame: 13 years). 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 NCT01590589, which also lists 16 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 15 Sep 2017.

AzTrials uses cookies for analytics and advertising. You can accept or reject them; the site works either way. Privacy Policy.

Free account

Log in to keep searching

You’ve used your 3 free searches. AzTrials is free: log in or create a free account to keep searching clinical trials and save the ones you want to follow.

Create a free accountLog in