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

• Sponsor: University Hospital, Angers (Other)
• Overall Status: Terminated
• CT.gov ID: NCT02218567
• Collaborator: (none)
• Enrollment: 12
• Location: 1
• Arms: 2
• Duration (Months): 18
• Patients Per Site Per Month: 0.7

Study Details

Study Description

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.

Condition or Disease	Intervention/Treatment	Phase
Huntington Disease	Behavioral: questionnaire qualilty of life; Behavioral: psychological interview; Behavioral: psychological tests; Other: Motor evaluation; Behavioral: Behavioral evaluation; Behavioral: cognitive tests	N/A

Study Design

• Study Type: Interventional
• Actual Enrollment: 12 participants
• Allocation: Non-Randomized
• Intervention Model: Parallel Assignment
• Masking: None (Open Label)
• Primary Purpose: Supportive Care
• Study Start Date: Jun 1, 2014
• Actual Primary Completion Date: Dec 1, 2015
• Actual Study Completion Date: Dec 1, 2015

Arms and Interventions

Arm	Intervention/Treatment
Other: Patients	Behavioral: psychological interview; Behavioral: psychological tests; Other: Motor evaluation; Behavioral: Behavioral evaluation; Behavioral: cognitive tests
Other: Caregivers	Behavioral: questionnaire qualilty of life; Behavioral: psychological interview

Outcome Measures

Primary Outcome Measures

1. 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.

Eligibility Criteria

Criteria

• Ages Eligible for Study: 18 Years and Older
• Sexes Eligible for Study: All
• Accepts Healthy Volunteers: Yes

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

Contacts and Locations

Locations

	Site	City	State	Country	Postal Code
1	University Hospital of Angers	Angers	Maine Et Loire	France	49933

Sponsors and Collaborators

• University Hospital, Angers

Investigators

None specified.

Study Documents (Full-Text)

None provided.

More Information

Publications

None provided.

• Responsible Party: University Hospital, Angers
• ClinicalTrials.gov Identifier: NCT02218567
• Other Study ID Numbers: 2014-A00327-40
• First Posted: Aug 18, 2014
• Last Update Posted: Oct 22, 2020
• Last Verified: Jun 1, 2014

• Additional relevant MeSH terms: Huntington Disease

Study Results

No Results Posted as of Oct 22, 2020