National Neurological Disease Data Collection – H.R. 2595/S.425

What does the legislation do?
The legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and Multiple Sclerosis (MS).  The surveillance system will be developed and maintained by the Centers for Disease Control and Prevention (CDC).  This system will provide researchers and epidemiologists with a coordinated system of health data on neurological diseases and should fuel further research.

Why do we need a surveillance system?
We estimate that over one million Americans are living with Parkinson’s disease but that figure is just a rough estimate.  This lack of core knowledge inhibits Parkinson’s research, treatments, programs, and services.  A national neurological surveillance system at CDC will provide data on the epidemiology, incidence, and prevalence of this progressive, neurodegenerative disease.  Better data will fuel scientific inquiry and will advance our understanding of how to treat and support the Parkinson’s community.

In 2000, the Pew Environmental Health Commission, based on review of available scientific literature, environmental data, and reported health trends, recommended that neurological diseases, such as Parkinson’s and MS, be tracked by a national data system.  The Commission stated that this data could allow us to identify populations at high risk, to recognize related environmental factors, and, when coupled with scientific research breakthroughs, begin to establish prevention strategies.

What is a “surveillance system?”  Why not a “registry?”
A surveillance system actively collects data, using a wide variety of data sources, to analyze and inform the public’s health.  The title of the legislation accurately reflects the name of the epidemiological method that will be used to collect data—a surveillance of existing records to expand our core knowledge.  

What data will be collected?
To develop the system, CDC will use existing data sources that provide information on:

  • Incidence and prevalence 
  • Demographics, such as age, race, ethnicity, sex, geographic location, and family history
  • Risk factors associated or possibly associated with neurological diseases, including genetic and environmental risk factors
  • Diagnosis and progression markers
  • Epidemiology and natural history
  • Detection, management, and treatment approaches

Data sources could include, but is not limited to, Medicare, Medicaid, the Department of Veterans Affairs, state registries, pharmacy databases, death certificates, and medical institutions.

What about privacy?
CDC will follow all relevant privacy and security protection laws and regulations.  Indeed, the bill requires that privacy standards be at least as strong as current law.  And most importantly, individual patient names and addresses will not be collected or stored in the system.

Will others help the CDC?
The CDC must consult with individuals with expertise while creating the surveillance system.  These experts include epidemiologists, national voluntary health associations focused on neurological diseases, health information technology experts, clinicians, and researchers.

Support for the Legislation

Congressional Support

Senator Mark Udall (D-CO) introduced S.425 in March 2011 and Representative Michael Burgess (R-TX) and Representative Chris Van Hollen (D-MD) introduced H.R. 2959 in July 2011.  S. 425 currently has 14 co-sponsors and H.R. 2595 has 77 co-sponsors.  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 support passage of S. 425 and H.R. 2595.

Community Support 

The following are examples of the community organizations that support the National Neurological Diseases Surveillance System Act:

Parkinson’s Action Network
The Michael J. Fox Foundation for Parkinson’s Research
Parkinson’s Disease Foundation
The Parkinson’s Alliance
National Parkinson Foundation
National Multiple Sclerosis Society
MS Coalition
American Academy for Neurology
Alliance for Aging Research
Muhammad Ali Parkinson Center
American Brain Coalition

You Can Help Secure Support!

Take action now to help secure support for this bill in the Senate and/or House of Representatives.