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

NCT02218567 | Terminated

• 1 other identifier: 2014-A00327-40
• Study Type: interventional
• Target: 12
• Locations: 1 country
• Sites: 1

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.

Conditions

Huntington Disease

Outcome Measures

Primary Outcomes (1)

• The Huntington's Disease health-related Quality of Life questionnaire

  The primary outcome is to find a list of caregiver competences necessary to prevent and adapt to behavioural problems of Huntington Disease patients.

  Baseline

Study Arms (2)

Patients

OTHER

Behavioral: psychological interview; Behavioral: psychological tests; Other: Motor evaluation; Behavioral: Behavioral evaluation; Behavioral: cognitive tests

Caregivers

OTHER

Behavioral: questionnaire qualilty of life; Behavioral: psychological interview

Interventions

questionnaire qualilty of life BEHAVIORAL

Caregivers

psychological interview BEHAVIORAL

Caregivers; Patients

psychological tests BEHAVIORAL

Patients

Motor evaluation OTHER

Patients

Behavioral evaluation BEHAVIORAL

Patients

cognitive tests BEHAVIORAL

Patients

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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

You may not qualify if:

• 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

Sponsors & Collaborators

• University Hospital, Angers: lead

Study Sites (1)

University Hospital of Angers

Angers, Maine Et Loire, 49933, France

Location

MeSH Terms

Conditions

Huntington Disease

Interventions

Interview, Psychological; Psychological Tests; Neuropsychological Tests

Condition Hierarchy (Ancestors)

Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Dementia; Chorea; Dyskinesias; Movement Disorders; Heredodegenerative Disorders, Nervous System; Neurodegenerative Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Cognition Disorders; Neurocognitive Disorders; Mental Disorders

Intervention Hierarchy (Ancestors)

Psychological Techniques; Behavioral Disciplines and Activities

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NON RANDOMIZED
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER GOV
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: August 14, 2014
• First Posted: August 18, 2014
• Study Start: June 1, 2014
• Primary Completion: December 1, 2015
• Study Completion: December 1, 2015
• Last Updated: October 22, 2020

Record last verified: 2014-06

Locations

FR (1)