Have you ever wondered how many people are living with Parkinson’s in the U.S.? Well, you’re not alone. Today we have some exciting news for you!
National Neurological Conditions Surveillance System (NNCSS)
Thank you, Angela for forwarding the information below from an email from the CDC. First, a bit of the background from Angela:
For many years (at least 8 years), grassroot advocates through the former Parkinson Action Network (PAN) and the Michael J Fox Foundation advocacy teams asked Congress to authorize and fund the CDC to create a surveillance system to learn about the numbers of those living with Parkinson’s and Multiple Sclerosis. Congress approved the legislation last year and this email from the CDC acknowledges that work has begun on this important project!!
The goal as they state on the website is to provide “useful estimates” of who in our country is living with Parkinson’s and MS. The surveillance system will “identify and summarize exsisting data” to find this estimate. The data will not have actual patient names attached. The hope is this model will be replicable to help other neurological conditions find out their actual numbers as well.
From the CDC newsletter:
In 2016, Centers for Disease Control and Prevention (CDC) was authorized by Congress to initiate development of a National Neurological Conditions Surveillance System (NNCSS). Congress appropriated $5 million for the NNCSS as part of the FY 2019 spending bill for the U.S. Department of Health and Human Services.
With this initial investment, consistent with the 21st Century Cures Act, the NNCSS will begin collecting and synthesizing data to help increase understanding of neurological disorders and to support further neurologic research.
To share updates and the latest news and developments, CDC has updated its NNCSS web page, which now includes:
• Logic model to describe the aims of the project and specific efforts in 2019
• Frequently asked questions (FAQs) to provide context and helpful information on the project, its stages, funding, and more
• Resource links to other CDC surveillance and data initiatives
Here’s a study that in the future may be related to the NNCSS mentioned above.
Study on the Economic Burden of Parkinson’s Disease
From the Parkinson’s Foundation we have information about the economic burden of Parkinson’s in the U.S. – $51.9 billion – nearly double previous estimates.
Click here to read more about the study.
Caring and Parkinson’s – Survey
The European Parkinson’s Disease Association (EPDA) is doing a survey on the challenges facing Parkinson’s caregivers (carers). Although their main focus is Europe, the are encouraging carers from all over the world to complete the survey. They are also asking people to share information about this survey with other people and organizations that connect with carers because they would like to reach as many as possible! The survey is open now until 6 September, 2019, and should take about 15-20 minutes to complete. Click here for more information about this survey and for links to complete it.
It’s a busy week with our cafes in Alexandria and Fairfax. The Fair Oaks Parkinson’s support group meets on Saturday, June 22, as well. Hope to see you out and about!