NCT01554033

Unknown

Study of Huntington Patients in Connection With European Hun...

Seoul National University Hospital Source

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Other study identifiers

Sponsor study identifier

H-0902-023-271

Study Type

observational

Estimated enrollment

200

Locations

1 country

Sites

1

Timeline

Study Start

May 2009

Date type not reported

This date has not been verified as actual or estimated.

Primary Completion

May 2015

Estimated (date passed)

This estimate has passed. The registry has not confirmed an actual date for this milestone.

Study Completion

May 2015

Estimated (date passed)

This estimate has passed. The registry has not confirmed an actual date for this milestone.

Brief Summary

REGISTRY is a multi-centre, multi-national, prospective, observational study of Huntington's disease (HD) with a control group of volunteers. It is an open-ended study which will include as many eligible participants as willing to participate. The goal of the project is to collect longitudinal data on the phenotypical characteristics of HD gene mutation carriers 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), in order to:

obtain natural history data on a wide spectrum of HD mutation carriers and individuals who are part of an HD family
relate phenotypical characteristics
with genetic factors ('genetic modifiers')
with data derived from the study of body fluids (blood, urine - 'wet biomarker') and
imaging data ('dry biomarker')
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 (observational and interventional trials aimed at better symptom control or aimed at slowing or postponing the onset and progression of HD).

Registry Overview

Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.

Recruitment status: unknown
Estimated enrollment: 200 participants
Study completion date: May 2015
Estimated (date passed)
This estimate has passed. The registry has not confirmed an actual date for this milestone.
Listed locations: 1 countries · 1 sites

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.

Study Start
May 2009
Date type not reported
This date has not been verified as actual or estimated.
First Submitted
March 11, 2012
Actual (reported)
First Posted
March 14, 2012
Actual (reported)
Primary Completion
May 2015
Estimated (date passed)
This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
May 2015
Estimated (date passed)
This estimate has passed. The registry has not confirmed an actual date for this milestone.

Last Updated: March 19, 2012
Status Verified: March 2012
Last Update Submitted: March 16, 2012

Conditions

Huntington Disease

Keywords

European Huntington's Disease NetworkHuntington patients in KOREA

Study Arms (2)

Huntington's disease patients

Huntington's disease patients and his(/her) family

age-sex matched control

age-sex matched control about huntington patients

Eligibility Criteria

Age1 Year - 80 Years

Sexall

Healthy VolunteersYes

Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

Sampling MethodProbability Sample

Study Population

primary care clinic

You may qualify if:

The following individuals may be eligible to participate

Sponsors & Collaborators

European Huntington's Disease Network
Research networkcollaborator
Seoul National University Hospital
Otherlead

Study Sites (1)

Department of Neurology, Seoul National University Hospital

Seoul, Seoul, 110744, South Korea

RECRUITING

Kim Manho, MD, PhDCONTACT+822-2072-2193 kimmanho@snu.ac.kr

Biospecimen

Retention: SAMPLES WITH DNA

serum-60ml urine-60ml Formation study of Lymphoblast and diagnosis of a Huntington gene

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 Disorders

Study Officials

Kim Manho, MD, PhD
Department of Neurology, Seoul National University Hospital
STUDY CHAIR

Central Study Contacts

Kim Manho, MD, PhD

CONTACT

+822-2072-2193 kimmanho@snu.ac.kr

Study Design

Study Type: observational
Observational Model: CASE CROSSOVER
Time Perspective: CROSS SECTIONAL
Sponsor Type: OTHER
Responsible Party: SPONSOR

Study Record Dates

First Submitted

March 11, 2012

First Posted

March 14, 2012

Study Start

May 2009

Date type not reported

This date has not been verified as actual or estimated.

Primary Completion

May 2015

Estimated (date passed)

NCT00491842

Individuals Patterns of Disclosure About Huntington s Disease (HD) and the Association With Adaptation to HD

Completed

NCT01411150

Premanifest Huntington's Disease: Creatine Safety & Tolerability Extension Study

Phase 2Completed

NCT00902889

Deep Brain Stimulation of the Globus Pallidus in Huntington's Disease

Phase 1Completed

NCT00632645

Neuroleptic and Huntington Disease Comparison of : Olanzapine, la Tetrabenazine and Tiapride

Phase 3Completed

NCT00712426

Creatine Safety, Tolerability, & Efficacy in Huntington's Disease (CREST-E)

Phase 3Terminated

NCT01411163

Premanifest Huntington's Disease Extension Study II: Creatine Safety & Tolerability

Phase 2Completed

Individuals, confirmed HD mutation carrier

Manifest HD, without 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). Participants may be male or female and of any age. All participants must be able to provide consent for themselves, have a parent/guardian who can provide parental permission, or have an authorised legal representative who can provide consent.

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.

Contact the study team to confirm eligibility.

Mental Disorders

This estimate has passed. The registry has not confirmed an actual date for this milestone.

Study Completion

May 2015

Estimated (date passed)

This estimate has passed. The registry has not confirmed an actual date for this milestone.

Last Updated

March 19, 2012

Record last verified: 2012-03

Source record

Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.

Source: ClinicalTrials.gov.

JSON downloads include source attribution and retrieval details alongside the unchanged original record or the separately normalized values.

Registry identifier: NCT01554033
Data provider: ClinicalTrials.gov
Source updated: 2012-03-19
Normalization version: ctgov-legacy-1

Open registry record

Source retrieved: 2026-10-25 22:27:53 UTC

Locations

KR(1)

Brief Summary

Registry Overview

Trial Relationships

Related Scientific Literature

Study Timeline

Study Start

First Submitted

First Posted

Primary Completion

Study Completion

Conditions

Keywords

Study Arms (2)

Huntington's disease patients

age-sex matched control

Eligibility Criteria

You may qualify if:

Sponsors & Collaborators

Study Sites (1)

Biospecimen

MeSH Terms

Conditions

Condition Hierarchy (Ancestors)

Study Officials

Central Study Contacts

Study Design

Study Record Dates

You may not qualify if:

Source record

Locations