PD Registry

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On behalf of the entire Parkinson’s community, the Parkinson’s Action Network (PAN) strongly supports the National MS and Parkinson’s Disease Registries Act, H.R. 1362/S. 1273.  This legislation will establish national Multiple Sclerosis (MS) and Parkinson’s disease registries that will determine the incidence and prevalence of the diseases and lay a foundation for better evaluating and understanding these diseases over time. 

PAN worked closely with the National MS Society to facilitate introduction of legislation in both chambers of Congress to address the lack of accurate incidence information that both communities face.  Both organizations will be advocating for this legislation in the hopes of having it signed into law in 2010.  

Why is this Important to the Parkinson’s Community?

We do not currently have accurate information how many Americans are battling Parkinson's disease and why.  This lack of core knowledge inhibits Parkinson’s research, programs, treatments, and services.  At a minimum, accurate information about the incidence and prevalence of Parkinson’s disease will assist in planning future healthcare needs, detect changes in health practices, assess disease burden, promote advocacy, and support a wide range of research initiatives.

It is our hope that these registries will facilitate research that may lead to discovery of breakthrough treatments, and one day a cure, for Parkinson’s, MS, and many other neurological diseases.

Bill Summary
The legislation calls for a science-based incremental approach to creating national registries for MS, Parkinson’s, and other neurological diseases that will measure the incidence and prevalence of the diseases.  More.

Support
PAN and the National MS Society, along with the Co-Chairs of Congressional Caucuses on Parkinson’s and MS, are currently urging all Members of Congress to cosponsor the National MS and Parkinson’s Disease Registries Act. More.

How you can help!
You can help the Parkinson’s community gain support for this important piece of legislation by contacting your Members of Congress.  Take Action!