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HD-Charge: Indirect and Out-of-Pocket Costs of Huntington's Disease in the United States

NCT03628235 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 233

Last updated 2022-09-21

No results posted yet for this study

Summary

Huntington's disease (HD) is a rare, inherited and progressive neurodegenerative disorder for which hallmark symptoms include movement disorders, loss of cognitive faculties and psychiatric disturbances. With the progression of the disease, patients require increasing level of medical care, caregiver support, and long-term care, which lead to substantial burden of illness. Very little data are available on the direct or indirect costs for HD. The direct medical costs of HD in the US have been summarized from retrospective commercial and Medicaid claims data analysis. The indirect and out-of-pocket costs of HD in the US have not been quantified. This study will help to bridge these gaps.

This study is a single-assessment, cross-sectional online survey administered to Huntington disease gene expansion carriers (HDGECs) and companions of HDGECs by HD stage to understand the indirect and out-of-pocket costs of Huntington's disease in the US.

Conditions

Interventions

BEHAVIORAL

Online survey

Online survey to capture indirect and out of pocket costs of Huntington's Disease in HDGECs and companions

Sponsors & Collaborators

  • IQVIA Company

    collaborator UNKNOWN

  • CHDI Foundation, Inc.

    lead OTHER

Eligibility

Min Age
21 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2020-06-21
Primary Completion
2022-06-21
Completion
2022-06-21

Countries

  • United States

Study Locations

More Related Trials

Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT03628235 on ClinicalTrials.gov