NCT01590589

Brief 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 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

Trial Health

98
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Strong global presence with extensive site network
Enrollment
10,000

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started Jun 2004

Longer than P75 for all trials

Geographic Reach
17 countries

140 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

June 1, 2004

Completed
7.8 years until next milestone

First Submitted

Initial submission to the registry

March 22, 2012

Completed
1 month until next milestone

First Posted

Study publicly available on registry

May 3, 2012

Completed
5.2 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 30, 2017

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

June 30, 2017

Completed
Last Updated

September 15, 2017

Status Verified

September 1, 2017

Enrollment Period

13.1 years

First QC Date

March 22, 2012

Last Update Submit

September 14, 2017

Conditions

Keywords

Huntington DiseaseEuropean HD NetworkCohortREGISTRYEHDN

Outcome Measures

Primary Outcomes (1)

  • Phenotypical characteristics of HD

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

    13 years

Study Arms (1)

REGISTRY participants

Individuals * 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)

Eligibility Criteria

Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
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)

You may qualify if:

  • 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).

You may not qualify if:

  • 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).

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (140)

Universitätsklinik fĂ¼r Psychiatrie, Neuropsychiatrische Ambulanz

Graz, 8036, Austria

Location

Universitätsklinik Innsbruck, Neurologie

Innsbruck, 6020, Austria

Location

UCL-St Luc, Centre de génétique humaine

Brussels, 1200, Belgium

Location

Institute of Pathology and Genetics (IPG)

Gosselies, B-6041, Belgium

Location

Universitair Ziekenhuis Gasthuisberg, Dienst Neurologie

Leuven, 3000, Belgium

Location

FakultnĂ­ nemocnice Olomouc, NeurologickĂ¡ klinika

Olomouc, 772 00, Czechia

Location

Centrum extrapyramidovĂ½ch onemocnÄ›nĂ­, NeurologickĂ¡ klinika, 1. LFUK

Prague, 12000, Czechia

Location

University Hospital of Copenhagen - Rigshospitalet, Dept. of Neurology

Copenhagen Ă˜, 2100, Denmark

Location

The Family Federation of Finland Väestöliitto, Department of Medical Genetics

Helsinki, FIN-00101, Finland

Location

Helsinki University Hospital, Dept. of Neurology

HUS, 29, Finland

Location

Kuopio University Hospital, Neurology

Kuopio, 1777 PL, Finland

Location

Ă…lands Hälso- och SjukvĂ¥rd, LĂ¥ngvĂ¥rdsenheten

Mariehamn, AX-22111, Finland

Location

Oulu University Hospital (OUH), Dept. of Neurology

Oulu, FIN-90220, Finland

Location

Suomen Terveystalo

Tampere, 33100, Finland

Location

Turku University Hospital, Dept. of Neurology

Turku, 20521, Finland

Location

The Finnish Parkinson Association, Suvituuli

Turku, 20900, Finland

Location

CHU d'Amiens - HĂ´pital Nord, Service de Neurologie

Amiens, 80054, France

Location

CHU d'Angers, Service de Neurologie Charcot

Angers, 49933, France

Location

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

Bordeaux, 33076, France

Location

HU Clermont-Ferrand - HĂ´pital Gabriel Montpied, Service de Neurologie

Clermont-Ferrand, 63003, France

Location

HĂ´pital Henri Mondor, Service de Neurologie

Créteil, 94010, France

Location

Clinique Neurologique HĂ´pital Roger Salengro CHRU, Neurologie et Pathologie du Mouvement

Lille, 59037, France

Location

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

Marseille, 13385, France

Location

Hôpital La Pitié Salpétrière, Génétique & Inserm U679

Paris, 75651, France

Location

CHU Rouen Charles Nicolle, Service de Neurologie

Rouen, 76031, France

Location

HĂ´pital Civil, Service de Neurologie

Strasbourg, 67091, France

Location

HĂ´pital Purpan, INSERM U825, PĂ´le Neurosciences

Toulouse, 31059, France

Location

Universitätsklinikum Aachen, Neurologische Klinik

Aachen, 52074, Germany

Location

CharitĂ© - Universitätsmedizin Berlin, Klinik und Poliklinik fĂ¼r Neurologie, Klinik fĂ¼r Psychiatrie und Psychotherapie

Berlin, 10117, Germany

Location

Ruhruniversität Bochum, Neurologie

Bochum, 44791, Germany

Location

Reha-Zentrum Dinslaken im Gesundheitszentrum Lang, Tagesklinik

Dinslaken, 46539, Germany

Location

Universitätsklinikum Carl Gustav Carus an der Technischen Universität Dresden, Klinik und Poliklinik fĂ¼r Neurologie

Dresden, 01307, Germany

Location

Universtität Erlangen, Abteilung fĂ¼r Molekulare Neurologie

Erlangen, 91054, Germany

Location

Universitätsklinikum Freiburg, Neurologie

Freiburg im Breisgau, 79106, Germany

Location

Universitätsklinikum Hamburg-Eppendorf, Neurologische Abteilung

Hamburg, 20246, Germany

Location

Neurologische Klinik mit Klinischer Neurophysiologie, Medizinische Hochschule Hannover

Hanover, 30625, Germany

Location

Psychatrium Gruppe AöR, Haus 2/1

Heiligenhafen, 23774, Germany

Location

Schwerpunktpraxis Huntington, Neurologie-Psychiatrie

Itzehoe, 25524, Germany

Location

Praxis

Marburg, 35039, Germany

Location

Universität Marburg, Neurologie

Marburg, 35039, Germany

Location

Technische Universität MĂ¼nchen, Abteilung Neurologie

MĂ¼nchen, 81675, Germany

Location

Universitätsklinikum MĂ¼nster, Klinik und Poliklinik fĂ¼r Neurologie

MĂ¼nster, 48129, Germany

Location

Isar-Amper-Klinikum - Klinik Taufkirchen (Vils)

Taufkirchen, 84416, Germany

Location

University Hospital of Ulm, Dept. of Neurology

Ulm, 89081, Germany

Location

University of Bari, Dept. of Neurological and Psychiatric Sciences

Bari, 70124, Italy

Location

UniversitĂ  di Bologna, Dip. di Scienze Neurologiche - Clinica Neurologica

Bologna, 40123, Italy

Location

Azienda Ospedaliera Spedali Civili di Brescia, Clinica Neurologica

Brescia, 25125, Italy

Location

University of Florence, Dip. di Scienze Neurologiche e Psichiatriche

Florence, 50134, Italy

Location

UniversitĂ  di Genova, Dept. of Neurosciences

Genova, 16132, Italy

Location

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

Milan, 20133, Italy

Location

Fondazione IRCCS Istituto Neurologico Carlo Besta, I Neurologia

Milan, 20133, Italy

Location

UniversitĂ  di Napoli Federico II, Dip. Scienze Neurologiche Edificio 17

Napoli, 80131, Italy

Location

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

Pisa, 56126, Italy

Location

IRCCS Neuromed, U.O. Neurogenetica

Pozzilli (IS), 86077, Italy

Location

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

Rome, 00139, Italy

Location

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

Rome, 00168, Italy

Location

Medisch Spectrum Twente, Dept. of Neurology

Enschede, 7500 KA, Netherlands

Location

UMC Groningen, Neurology

Groningen, 9700 RB, Netherlands

Location

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

Leiden, 2300 RC, Netherlands

Location

MUMC, Dept. Neurology

Maastricht, 6202 AZ, Netherlands

Location

NKS Olaviken Alderpsykiatriske sykehus, Poliklinikk og Huntington Klinikk

Bergen, 5009, Norway

Location

Rikshospitalet, Dept. of Medical Genetics

Oslo, 27, Norway

Location

Ulleval University Hospital, Medical Genetics

Oslo, 407, Norway

Location

St. Olavs Hospital HF, Neurology

Trondheim, 7006, Norway

Location

Specialistic Hospital in Gdansk, Dept. of Neurology

Gdansk, 80-462, Poland

Location

Medical University of Silesia, Dept. of Neurology

Katowice, 40-752, Poland

Location

Krakowska Akademia Neurologii

Krakow, 31-530, Poland

Location

Poznan University of Medical Sciences, Dept. of Social Medicine

Poznan, 60-806, Poland

Location

Medical University of Warsaw, Dept. of Neurology

Warsaw, 02-097, Poland

Location

Institute of Psychiatry and Neurology, First Dept. of Neurology

Warsaw, 02-957, Poland

Location

Hospital de Coimbra, Neurology Dept.

Coimbra, 3004 561, Portugal

Location

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

Lisbon, 1169-050, Portugal

Location

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

Lisbon, 1649-028, Portugal

Location

Hospital Fernando Fonseca, Neurology Dept.

Lisbon, 2700, Portugal

Location

Hospital de SĂ£o JoĂ£o, Neurology Dept.

Porto, 4000, Portugal

Location

Hospital Geral de Santo AntĂ³nio, Neurology Dept.

Porto, 4000, Portugal

Location

Centro Hospitalar de TrĂ¡s-os-Montes e Alto Douro, Neurology Dept.

Vila Real, 5000, Portugal

Location

Huntington's Disease Society of Russia

Moscow, 125367, Russia

Location

Complejo Hospitalario Universitario de Albacete, NeurologĂ­a

Albacete, 2006, Spain

Location

Hospital Infanta Cristina, NeurologĂ­a

Badajoz, 6080, Spain

Location

Hospital Vall d'HebrĂ³n, NeurologĂ­a, 3ª planta, consultas externas

Barcelona, 8035, Spain

Location

Hospital ClĂ­nic i Provincial, NeurologĂ­a

Barcelona, 8036, Spain

Location

Hospital Bellvitge, NeurologĂ­a

Barcelona, 8907, Spain

Location

Hospital General YagĂ¼e, Neurology

Burgos, 9006, Spain

Location

Hospital Puerta del Mar, NeurologĂ­a

Cadiz, 11009, Spain

Location

Centro RamĂ³n y Cajal, NeurologĂ­a

Madrid, 28034, Spain

Location

FundaciĂ³n JimĂ©nez DĂ­az, Neurology

Madrid, 28040, Spain

Location

Hospital ClĂ­nico de Madrid, Servicio de NeurologĂ­a

Madrid, 28044, Spain

Location

Hospital de Fuenlabrada, Neurology

Madrid, 28942, Spain

Location

Hospital Virgen de la Arrixaca, Neurology

Murcia, 30120, Spain

Location

Hospital Central de Oviedo, NeurologĂ­a

Oviedo, Spain

Location

Hospital Son Dureta, Neurology

Palma de Mallorca, 7014, Spain

Location

Hospital Virgen del Camino, Medical Genetics

Pamplona, 31008, Spain

Location

Hospital Donostia. Universidad del Pais Vasco, Neurociencias

San SebastiĂ¡n, 20014, Spain

Location

Hospital General de Segovia, NeurologĂ­a

Segovia, 40001, Spain

Location

Hospital Universitario Virgen del RocĂ­o, Servicio de NeurologĂ­a

Seville, 41013, Spain

Location

Hospital Virgen Macarena, NeurologĂ­a

Seville, Spain

Location

Hospital Universitario Mutua de Terrassa, Neurologia - InvestigaciĂ³n

Terrassa - Barcelona, 8221, Spain

Location

Hospital Virgen de la Salud, Neurology

Toledo, 45004, Spain

Location

Hospital La Fe, Consultas Externas de NeurologĂ­a

Valencia, 46026, Spain

Location

Hospital Clinico Universario, Department of Neurology

Zaragoza, 50009, Spain

Location

Sahlgren University Hospital, Dept. of Clinical Genetics

Gothenburg, 41345, Sweden

Location

SkĂ¥ne Universitetssjukhus, Neurologiska kliniken

Lund, 22185, Sweden

Location

Neuroenheten Utsikten

Stockholm, 11 691, Sweden

Location

Karolinska University Hospital - Huddinge Division, Neurology

Stockholm, 141 86, Sweden

Location

Norrlands Universitet Sjukhus, Dept. of Neurology

UmeĂ¥, 901 85, Sweden

Location

Uppsala University Hospital, Neurology

Uppsala, 751 85, Sweden

Location

Neurologische Klinik des Inselspitals, Praxis

Bern, 3006, Switzerland

Location

CHUV - Centre Hospitalier Universitaire Vaudois, Département de Neurologie

Lausanne, 1011, Switzerland

Location

University Hospital Zurich, Dept. of Neurology

Zurich, 8091, Switzerland

Location

Clinical Genetics Centre, Ground Floor, Ashgrove House

Aberdeen, AB25 2ZA, United Kingdom

Location

The Barberry Centre, Dept. of Psychiatry

Birmingham, B15 2FG, United Kingdom

Location

Blandford Hospital

Blandford Forum, DT11 7DD, United Kingdom

Location

Frenchay Hospital, Neurology Dept.

Bristol, BS16 1LE, United Kingdom

Location

Cambridge Centre for Brain Repair, Forvie Site

Cambridge, CB2 0PY, United Kingdom

Location

Cardiff University, Life Sciences Building

Cardiff, CF10 3US, United Kingdom

Location

Ninewells Hospital and Medical School, Human Genetics Unit

Dundee, DD1 9SY, United Kingdom

Location

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

Edinburgh, EH4 2XU, United Kingdom

Location

Royal Devon and Exeter Foundation Trust Hospital, Department of Neurology

Exeter, EX2 5DW, United Kingdom

Location

Queen Margaret Hospital

Fife, KY12 OSU, United Kingdom

Location

Scottish Huntington Association, Units 105/106

Glasgow, G40 2DD, United Kingdom

Location

Gloucestershire Royal Hospital, Neurology Dept.

Gloucester, United Kingdom

Location

Chapel Allerton Hospital, Yorkshire Regional Genetics Service

Hull, LS7 4SA, United Kingdom

Location

Chapel Allerton Hospital

Leeds, LS7 4SA, United Kingdom

Location

Leicestershire Partnership NHS Trust, EMD South School, OSL house

Leicester, LE19 1XU, United Kingdom

Location

The Walton Centre for Neurology and Neurosurgery

Liverpool, L9 7LJ, United Kingdom

Location

Guy's Hospital, Dept. of Neurology

London, SE1 9RT, United Kingdom

Location

The Royal Hospital for Neuro-disability, Research and Development

London, SW15 3SW, United Kingdom

Location

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

London, SW17 0RE, United Kingdom

Location

National Hospital for Neurology and Neurosurgery, Dept. for Neurology

London, WC1N 3BG, United Kingdom

Location

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

Manchester, M13 9WL, United Kingdom

Location

Institute of Human Genetics, International Centre for Life

Newcastle upon Tyne, NE1 3BZ, United Kingdom

Location

Churchill Hospital, Dept. of Clinical Genetics

Oxford, OX3 7LJ, United Kingdom

Location

Derriford Hospital, Dept. of Clinical Neuropsychology

Plymouth, PL6 8AH, United Kingdom

Location

Poole Hospital Foundation Trust, Brain Injury Service

Poole, BH15 2JB, United Kingdom

Location

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

Preston, PR2 9HT, United Kingdom

Location

Sheffield Children's Hospital, Dept. of Clinical Genetics

Sheffield, S10 2TH, United Kingdom

Location

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

Southampton, SO16 6YD, United Kingdom

Location

Bucknall Hospital, Neuropsychiatry Service

Stoke-on-Trent, ST2 8LD, United Kingdom

Location

Victoria Centre

Swindon, SN3 6BW, United Kingdom

Location

Related Publications (16)

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • Cubo E, Ramos-Arroyo MA, Martinez-Horta S, Martinez-Descalls A, Calvo S, Gil-Polo C; European HD Network. Clinical manifestations of intermediate allele carriers in Huntington disease. Neurology. 2016 Aug 9;87(6):571-8. doi: 10.1212/WNL.0000000000002944. Epub 2016 Jul 8.

Related Links

Biospecimen

Retention: SAMPLES WITH DNA

* DNA from whole blood * DNA * Lymphoblastoid cell lines * Urine

MeSH Terms

Conditions

Huntington Disease

Condition Hierarchy (Ancestors)

Basal Ganglia DiseasesBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesDementiaChoreaDyskinesiasMovement DisordersHeredodegenerative Disorders, Nervous SystemNeurodegenerative DiseasesGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesCognition DisordersNeurocognitive DisordersMental Disorders

Study Officials

  • Bernhard Landwehrmeyer, Professor

    University Hospital of Ulm / Dept. of Neurology

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
OTHER
Sponsor Type
NETWORK
Responsible Party
SPONSOR

Study Record Dates

First Submitted

March 22, 2012

First Posted

May 3, 2012

Study Start

June 1, 2004

Primary Completion

June 30, 2017

Study Completion

June 30, 2017

Last Updated

September 15, 2017

Record last verified: 2017-09

Locations