Behavioural Problems in Huntington Disease : Analysis and Enhancement of Caregiver and Patient Experience

Not Applicable

Terminated

• Conditions: Huntington Disease
• Interventions: Behavioral: questionnaire qualilty of life; Behavioral: psychological interview; Behavioral: psychological tests; Other: Motor evaluation; Behavioral: Behavioral evaluation; Behavioral: cognitive tests

• Registration Number: NCT02218567
• Lead Sponsor: University Hospital, Angers

Brief Summary

The study hypothesis is that caregivers experience allows them to develop a lot of knowledge and know-how about behavioural problems in Huntington Disease and its consequences. The purpose of this study is to collect, describe and analyse caregivers experience in order to find and enhance their knowledge related to the adaptation to behavioural problems of Huntington Disease patients.

Detailed Description

Not available

Study Timeline

• Status Verified: 2014-06
• Study Start: 2014-06
• Study First Submitted: 2014-08-14
• Study First Submitted QC: 2014-08-14
• Study First Posted: 2014-08-18
• Primary Completion: 2015-12
• Study Completion: 2015-12
• Last Update Submitted: 2020-10-20
• Last Update Posted: 2020-10-22

Recruitment & Eligibility

• Status: TERMINATED
• Sex: All
• Target Recruitment: 12

Inclusion Criteria

• For patients:

  • Patients with Huntington Disease declared
  • Huntington Disease diagnosed with abnormal number of CAG repeats: 38 < nucleotide expansion (CAG)
  • Total Functional Capacity ≥ 7
  • Patients living with a caregiver
  • Aged 18 years and above
  • Subject gave its written consent

• For caregivers :

  • No risk of caregiver having Huntington disease
  • Aged 18 years and above
  • Subject gave its written consent

Exclusion Criteria

• For patients:

  • Patient who do not live with a caregiver
  • No national health insurance affiliation
  • Being under guardianship

• For caregivers :

  • Caregiver at risk for Huntington Disease
  • No national health insurance affiliation
  • Being under guardianship

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: PARALLEL

Arm && Interventions

Group	Intervention	Description
Patients	Behavioral evaluation	-
Caregivers	questionnaire qualilty of life	-
Patients	cognitive tests	-
Patients	psychological interview	-
Patients	Motor evaluation	-
Caregivers	psychological interview	-
Patients	psychological tests	-

Primary Outcome Measures

Name	Time	Method
The Huntington's Disease health-related Quality of Life questionnaire	Baseline	The primary outcome is to find a list of caregiver competences necessary to prevent and adapt to behavioural problems of Huntington Disease patients.

Trial Locations

Locations (1)

University Hospital of Angers; 🇫🇷 Angers, Maine Et Loire, France