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

NCT01590602 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 78

Last updated 2017-09-15

No results posted yet for this study

Summary

The study aims to monitor the progression of symptoms and signs of those affected by JHD using modified UHDRS scales of motor and function (functional assessment, TFC). This will provide some basic data to analyse the usefulness of the proposed rating scales. Specifically, the initial aim is to assess these rating scales using an iterative process.

There may be significant delays in diagnosis of JHD especially if the young person presents with behavioural problems. Caregivers will be asked questions to capture the number of contacts with professionals in the time between onset of concerns about the young person and the confirmation of diagnosis.

Aim is to monitor the progression of symptoms and signs of those affected by JHD using modified UHDRS scales of motor and function (functional assessment, TFC). This will provide some basic data to analyse the usefulness of the proposed rating scales.

Conditions

  • Huntington Disease, Juvenile

Sponsors & Collaborators

  • European Huntington's Disease Network

    lead NETWORK

Principal Investigators

  • Oliver Quarrell, MD · Sheffield Children's Hospital

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2011-11-30
Primary Completion
2017-06-30
Completion
2017-06-30

Countries

  • Germany
  • United Kingdom

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 NCT01590602 on ClinicalTrials.gov