National Neurological Diseases Surveillance System Act Will Create Parkinson's and Multiple Sclerosis Disease Registries

March 2011 Monthly Message

- April is Parkinson's Awareness Month
- PAN CEO, Amy Comstock Rick, Testifies on Capitol Hill in Support of Small Business
- Update from Merck About Sinemet
- 2011 PAN Forum: Making Our Voices Heard in Congress
- National Neurological Diseases Surveillance System Act Will Create Parkinson's and Multiple Sclerosis Disease Registries
- SAVE THE DATE – 2011 Morris K. Udall Awards Dinner
- Medtronic Global Heroes Seek Marathon Runners
- Parkinson's in the Media

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On Tuesday, March 1, 2011, Senator Mark Udall (D-CO) introduced S. 425 – the National Neurological Diseases Surveillance System Act – with co-sponsors Sen. Bob Casey (D-PA), Sen. Johnny Isakson (R-GA), Sen. Mike Johanns (R-NE), and Sen. Debbie Stabenow (D-MI).

The bill will create, for the first time, separate, permanent, and coordinated Parkinson's disease and Multiple Sclerosis national registries at the Centers for Disease Control and Prevention (CDC).  The registries will rely upon existing databases including Medicare, Veterans Affairs, state registries, and other databases to determine the incidence and prevalence of MS and Parkinson's disease across America.

The day before introducing the legislation, Sen. Udall told attendees at the Parkinson’s Action Network (PAN) Research & Public Policy Forum of his plans to introduce the bill the following day.  In his remarks, he said, "This important legislation would give the research community a one-stop-shop for data being collected on these diseases from around the country.  Increasing our understanding of the prevalence, common patient characteristics, geographic similarities, and other information about these diseases will be a huge help to the brilliant minds who work daily to uncover the secrets of Parkinson's and other neurological disorders."

“We can only cite estimated numbers when talking about Parkinson's cases, but the frustrating truth is that we actually don’t know how many people are living with Parkinson’s disease in America,” said Amy Comstock Rick, PAN Chief Executive Officer.  “This critically important legislation sets us on a course to learn who is affected by this terrible disease and where there are geographical clusters, because in doing so it will enable scientists to better understand the causes of MS and Parkinson’s disease and help move us toward better treatments and, ultimately, a cure."

The National Neurological Diseases Surveillance System Act was introduced in the previous Congress, and PAN advocates worked to secure sponsorship of 206 Representatives and 30 Senators for this bill.  On September 28, 2010, the House of Representatives passed the National Neurological Diseases Surveillance System Act by voice vote, a significant victory for the Parkinson’s community, but, sadly, the bill was not brought to a vote in the Senate.  We are optimistic that it will be this year.

To learn more about how to encourage your elected officials to support this legislation, click here.