Huntington's Disease Clinical Trial
Official title:
Indirect and Out-of-Pocket Costs of Huntington's Disease in the United States
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.
The survey collects the following data from each HDGEC and companion: 1. Participant demographics (for HDGECs and companion) 2. Informal care received (for HDGECs only) 3. Out of pocket HD costs (for HDGECs and companion) 4. Current employment status (for HDGECs and companion) 5. Non-work and work care giving time that companion spends taking care of HDGEC (for companion only) 6. Work Productivity and Activity Impairment (WPAI) Questionnaire (for HDGECs and companion) ;
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