Bill Summary

What does the bill 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.  In 2009, the bill was introduced to create separate registries for Parkinson’s disease and MS.  The new bill, therefore, 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.  The concept of the bill, however, has not changed in any way—data will be collected from existing data sources.

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.