Important New Study Underway: Get Involved

Important New Study Underway: Get Involved


Understanding the costs of PD

Our community knows that a Parkinson’s diagnosis doesn’t just affect overall health, it can also lead to increased costs for patients and families. While some of these expenses are tangible, such as insurance co-pays, others are more difficult to quantify, such as taking time off work.

A new study called “The Economic Burden of Parkinson’s Disease” is being conducted by The Michael J. Fox Foundation, with support from the Parkinson’s Foundation, the American Parkinson Disease Association (APDA), The Parkinson Alliance, and several industry groups (Acadia, Acorda, Adamas and Biogen). The survey findings will be shared with lawmakers in order to advocate for public policy changes that can help reduce Parkinson’s expenses, such as increased funding for research and comprehensive access to health care services.

About the “Economic Burden” Study

The study seeks to capture more of the financial costs associated with Parkinson’s. Study researchers will look at de-identified data from the Centers for Medicare and Medicaid Services, the Centers for Disease Control and Prevention and the Bureau of Labor Statistics, among other government agencies, to investigate how much patients pay for their medical care. They will also use this data to examine how leaving the workforce or reducing work hours — whether it’s due to living with Parkinson’s or caring for a loved one with the disease — affects family finances.

You can help!

An important component of the study is a survey to patients and families to learn more about the economic impact of the disease, beyond what can be gleaned from Medicare/Medicaid records In addition to asking about the topics mentioned above, the survey will gather information on expenses that aren’t easy to assess, such as time spent providing unpaid care to a family member.

In collaboration and as a supporter of the survey, we’re inviting you to participate in this survey to help researchers better understand the cost associated with Parkinson’s and the impact the disease has on family finances.

The survey should take about 40 minutes to complete and will remain open until November 7.

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