By Karen Hales, Neurology Solutions Contributing Writer
New legislation to create a national data collection system for Parkinson’s disease and other neurological disorders to support better Parkinson’s research and services will be discussed during an upcoming meeting of the Capital Area Parkinson’s Society. Supported by the Parkinson’s Action Network, the H.R. 292 bill would allow for collection of data such as the geography of diagnoses, variances in gender, disease burden and changes in healthcare practices among patients to be used in evaluating and planning for our nation’s health care needs.
Neurology Solutions Movement Disorders Center aims to be part of the support community for those living with neurological and other movement disorders through our blog and specialized practice as well as within our community. Neurology Solutions is represented on the board of the Capital Area Parkinson’s Society (CAPS), a central Texas organization that has built a community for people with PD and their care partners by offering support groups, resources, exercise programs and more.
CAPS hosts carefully chosen informative speakers during its monthly meetings, and this Saturday’s meeting is particularly important to those affected by neurological disorders and their families as well as neurological professionals. CAPS will present a roundtable discussion of the proposed Advancing Research Diseases Act of 2015 (H.R. 292), a bipartisan bill presented by Rep. Michael C. Burgess (R-TX) and Rep. Chris Van Hollen (D-MD) that would create a national data collection system for Parkinson’s disease and other neurological disorders to support better research and services. The bill is supported by the Parkinson’s Action Network.
In April 2015, the House of Representative’s Energy and Commerce Committee included H.R. 292 in the second draft of the 21st Century Cures Act, a broad piece of legislation focused on accelerating the pace of cures in America through medical innovation. The House is expected to bring the 21st Century Cures Act to a vote this summer, and after that vote the Senate will debate their version. According to Ted Thompson, CEO of the Parkinson’s Action Network, researchers have long said that having such a data collection system will ensure better and more effective research, better treatments, and better services for people living with Parkinson’s disease and other neurological disorders.
Read more here and here about how you can support this legislation and join the CAPS Monthly Meeting at 2 p.m., Saturday, May 16 at St. David’s Medical Center for a discussion on the best ways the Parkinson’s community in Central Texas can come together to form a position on this issue impacting future research efforts.
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