Senate Bill to Create MS and Parkinson's Disease Registries Introduced
 

Senate Bill to Create MS and Parkinson's Disease Registries Introduced

PAN lauds collaborative caucus effort and begins work to enact legislation

WASHINGTON, DC—The Parkinson’s Action Network (PAN) celebrates Senate introduction of a bill to create Multiple Sclerosis (MS) and Parkinson’s disease registries. The bill will create, for the first time, separate, permanent, and coordinated MS and Parkinson’s disease national registries at the Agency for Toxic Substances and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC). The registries will rely upon existing databases, such as Medicare, VA, state registries, and other databases, to determine the incidence and prevalence of MS and Parkinson’s disease.

The Registries bill was introduced by Sen. Byron Dorgan (D-ND), Senate Co-Chair of the Congressional MS Caucus, with original sponsors Senators Debbie Stabenow (D-MI), Mark Udall (D-CO) and Johnny Isakson (R-GA), Senate Co-Chairs of the Bicameral Congressional Caucus on Parkinson’s Disease.

“I am often asked ‘how many people are suffering from Parkinson’s disease,’” said Parkinson’s Action Network CEO, Amy Comstock Rick. “While there are estimated numbers we can cite, the frustrating truth is that we don’t know how many people are living with Parkinson’s disease or what else they have in common. This important legislation sets us on a course to answer this long-standing question and learn who is affected by this terrible disease. We expect to learn more than just the numbers of people living with Parkinson’s and MS -- the registries developed under this bill will help scientists better understand the causes of MS and Parkinson’s disease and advance toward better treatments and, ultimately, a cure for these diseases and others.”

“This registry will be an important tool in fighting these debilitating diseases, which affect millions of Americans and their families,” said Dorgan. “In order to gain a better understanding of these diseases doctors and researchers must have as much information in their hands as possible. These registries will help researchers improve existing treatments. And we hope research will eventually lead scientists to a cure for MS, Parkinson’s disease and other neurological disorders. I urge my colleagues to support this legislation.”

“Having greater data on degenerative diseases like Parkinson’s and Multiple Sclerosis will help us learn more about what causes these diseases and ultimately what will cure them. Over one million people from across the country are afflicted by Parkinson’s, including the 50,000 people in Michigan,” said Stabenow. “I remember the anguish my family went through when my grandmother suffered from Parkinson’s and, as the chair of the Senate Parkinson’s Caucus, I am so proud to be a part of this legislation to fight this disease in a more coordinated and efficient way. With the proper funding, I know that our nation’s medical professionals can fight and cure these debilitating diseases.”

“After watching my father’s fight against Parkinson’s, I know how hard it is on families in Colorado and across America,” said Udall. “This legislation is crucial to arming our research and public health communities with the information they need to develop breakthrough treatments and, one day, a cure for Parkinson’s, MS, and many other diseases that touch the lives of so many Americans.”

This legislation calls for a science-based incremental approach to creating national registries for MS, Parkinson’s, and other neurological diseases. The National MS and Parkinson’s Disease Registries Act calls for the implementation of a national MS registry that is based on the methodology developed by ATSDR’s recently completed MS pilot studies. In addition, the bill requires that ATSDR expand upon the MS model to develop a national registry for Parkinson’s disease. Finally, the bill instructs ATSDR to apply the knowledge learned via the national MS and Parkinson’s registry methodologies to develop registries for other neurological diseases.

The information collected through the registries will provide a foundation for evaluating and understanding many factors such as geographic clusters of diagnoses, variances in the gender ratio, disease burden, and changes in health care practices. In addition, the legislation will give us the ability to examine changes over time, such as an increasing rate of young-onset Parkinson’s disease. The MS and Parkinson’s registries may help uncover and inform promising areas of research such as genetic and environmental risk factors and the resulting data could be used to provide consistency and coordination in addressing treatment of disease nationwide.

In March, Rep. Chris Van Hollen, along with the other Co-Chairs of the Bicameral Congressional Caucus on Parkinson’s Disease and the Congressional MS Caucus, introduced the same bill in the House. The bill number for the House bill is H.R. 1362.

http://www.parkinsonsaction.org/Sena...ntroduced.html

willl they become mandatory?
 

Thank you Carolyn, this is significant.
Feels like we're going to have significant changes and they are coming everyday. Gotta gear up.. . . . . . dunno what it means, just sounds ok.

thanks, PAN
paula

Thanks, Carolyn
 

At the visits to Capitol Hill during PAN's forum this year, the MS folks had already blazed a path for theh Parkinson's community. Several attempts have been made to initiate a registry (for example - the Ali Foundation in Arizona). The problem is that those designingn the registr y tried to cover evey possible question (family history, demographic info, etc). Of course the more you ask, the less likely you will get participation, so all have been a flop.

This plan with MS just might work. Keep an eye on this folks!
We NEED a reliable count of how many have PD in the US.

PAN lauds collaborative caucus effort and begins work to enact legislation


WASHINGTON, DC—The Parkinson’s Action Network (PAN) celebrates Senate introduction of a bill to create Multiple Sclerosis (MS) and Parkinson’s disease registries. The bill, S. 1273, will create, for the first time, separate, permanent, and coordinated MS and Parkinson’s disease national registries at the Agency for Toxic Substances and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC). The registries will rely upon existing databases, such as Medicare, VA, state registries, and other databases, to determine the incidence and prevalence of MS and Parkinson’s disease.
for the rest of the article, go to:
http://www.parkinsonsaction.org/Sena...ntroduced.html

Peggy