Couple and Spouse Caregiver in Huntington's Disease

NCT04394767 | Terminated

• 2 other identifiers: 2018_332018-A02046-49
• Study Type: observational
• Target: 48
• Locations: 1 country
• Sites: 1

Brief Summary

The objectives are to better document the psychosocial status and needs of caregiver of HD patients and understand the dyad functioning, facing the disease at various stages.

Conditions

Huntington Disease

Keywords

Huntington's disease; spouse caregiver; quality of life

Outcome Measures

Primary Outcomes (1)

• report of the experience and interactions of couple and Spouse Caregiver in Huntington's Disease

  Qualitative assessment: Interpretative phenomenological analysis (IPA) by semi-structured interviews to explore families representations and strategies about the patients with Huntington's Disease

  once time, Baseline

Secondary Outcomes (1)

• report of the experience and interactions of couple and Spouse Caregiver in Huntington's Disease

  once time, Baseline

Eligibility Criteria

• Age: 30 Years - 70 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Huntington disease population ( patient, caregiver, spouses)

You may qualify if:

• For patient :
• HD, CAG \> 36, motor UHDRS \> 5
• Being able to communicate with the investigator
• For both spouses :
• Living together since at least 5 years
• to 60 years old

You may not qualify if:

• For patient :
• \- Other chronic neurologic disorder
• For both spouses :
• Psychiatric disease
• Unable to participate, incl read, understand and sign the informed consent

Sponsors & Collaborators

• University Hospital, Lille: lead

Study Sites (1)

Hôpital Roger Salengro, CHU Lille

Lille, 59037, France

Location

MeSH Terms

Conditions

Huntington Disease

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

Study Officials

• Clémence Simonin, MD

  University Hospital, Lille

  PRINCIPAL INVESTIGATOR

• Pascal ANTOINE, MD

  University Hospital, Lille

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 16, 2019
• First Posted: May 19, 2020
• Study Start: January 13, 2020
• Primary Completion: January 12, 2024
• Study Completion: January 12, 2025
• Last Updated: May 16, 2025

Record last verified: 2025-05

Locations

FR (1)