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Financial Impact of PSP, CBD and MSA

1.Information Sheet

Principal Investigator (PI): Kristophe Diaz
Primary Contact: Saira Mehra
Email: mehra@curepsp.org

Thank you for taking the time to participate in this survey. With your answers, we hope to better understand the financial and economic impact that progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) have on individuals and their families. Having a greater understanding of the financial impact of these diagnoses will help direct CurePSP’s priorities to further support the PSP, CBD and MSA communities.

When filling out this survey, please coordinate with all members of the household who provide care for the person with PSP, CBD or MSA. This will help to ensure accurate information and eliminate duplicate responses among household members.

All information provided will be anonymous.

Eligibility:
This survey is open to individuals who:
-Have a diagnosis of PSP, CBD or MSA, OR are a current care partner to someone with PSP, CBD or MSA.
-Live in the United States.
Note:
Please complete the survey in one sitting, as your responses may not be saved if you exit and return later. Before beginning, gather any relevant documents or records related to your medical expenses, such as costs for home modifications, medications, doctor visits, transportation, and other care-related expenses associated with your diagnosis, to help ensure accurate responses.
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1.FREQUENTLY ASKED QUESTIONS:

How long will this survey take?
This survey should take approximately 40 minutes to complete. You should complete this survey in one sitting. If you need any technical assistance to complete this survey, please contact CurePSP at mehra@curepsp.org

What exams, tests and procedures does this survey require?
The survey does not require any medical tests, procedures or in-person visits. No personally identifiable information (such as name, date of birth or social security number) will be collected.

What risks can I expect from taking part in this study?
There is no physical risk associated with participation. Some of the questions may cause emotional stress, and you can skip any question that makes you uncomfortable in any way. If you do experience distress while answering the questions or afterwards, you can reach out to CurePSP or another trusted resource.

Will I receive results from the information collected in this study?
No, individual results will not be shared with participants. However, CurePSP may share a summary of the overall findings from this study, such as on the CurePSP website or in a report, to help better understand the cost burden of the disease and advocate for improved support and resources.

Have you read ALL of the Information Sheet?(Required.)