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Study of Huntington Patients in Connection With European Huntington's Disease Network (EHDN)

NCT01554033 · Status: UNKNOWN · Type: OBSERVATIONAL · Enrollment: 200

Last updated 2012-03-19

No results posted yet for this study

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).

Conditions

  • Huntington Disease

Sponsors & Collaborators

  • European Huntington's Disease Network

    collaborator NETWORK

  • Seoul National University Hospital

    lead OTHER

Principal Investigators

  • Kim Manho, MD, PhD · Department of Neurology, Seoul National University Hospital

Eligibility

Min Age
1 Year
Max Age
80 Years
Sex
ALL
Healthy Volunteers
Yes

Timeline & Regulatory

Start
2009-05-31
Primary Completion
2015-05-31
Completion
2015-05-31

Countries

  • South Korea

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT01554033 on ClinicalTrials.gov