Huntington Disease
Conditions
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.
Interventions
BEHAVIORALpsychological interview
BEHAVIORALpsychological tests
OTHERMotor evaluation
BEHAVIORALBehavioral evaluation
BEHAVIORALcognitive tests
BEHAVIORALquestionnaire qualilty of life
Sponsors
University Hospital, Angers
Study design
Allocation
NON_RANDOMIZED
Intervention model
PARALLEL
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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. |
Countries
France
Outcome results
None listed