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

University Hospital, Angers

Status: Terminated

Conditions: Huntington Disease

Treatments: Behavioral: Behavioral evaluation; Behavioral: cognitive tests; Other: Motor evaluation; Behavioral: psychological interview; Behavioral: psychological tests; Behavioral: questionnaire qualilty of life

Study type: Interventional

Funder types: Other

Identifiers

NCT02218567

2014-A00327-40

Details and patient eligibility

About

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.

Enrollment: 12 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

Primary purpose: Supportive Care

Allocation: Non-Randomized

Interventional model: Parallel Assignment

Masking: None (Open label)

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12 participants in 2 patient groups

Patients

Other group

Treatment:

Behavioral: psychological tests

Behavioral: cognitive tests

Behavioral: Behavioral evaluation

Behavioral: psychological interview

Other: Motor evaluation

Caregivers

Other group

Treatment:

Behavioral: questionnaire qualilty of life

Behavioral: psychological interview