Friday, April 17, 2015

Ask Congress to Sponsor the #NeuroData Bill

The Neurological Diseases Act of 2015:

  • Requires the Centers for Disease Control and Prevention (CDC)
    • to enhance and expand infrastructure and activities to track the epidemiology of neurological diseases; and
    • to incorporate information obtained through such activities into a statistically-sound, scientifically-credible, integrated surveillance system, to be known as the National Neurological Diseases Surveillance System.
  • Requires the Department of Health and Human Services (HHS) to ensure that the System facilitates further research on neurological diseases.
  • Requires HHS to provide for the collection and storage of information on neurological diseases, including the incidence, prevalence, and other information, such as demographics, risk factors, diagnosis and progression markers, to the extent practicable.
  • Requires HHS to provide for the collection and storage of information relevant to analysis on neurological diseases, including epidemiology, natural history, and prevention of the diseases; the detection, management, and treatment approaches for the diseases; and the development of outcomes measures.
  • Requires HHS to consult with individuals with appropriate expertise, including clinicians, epidemiologists, research scientists, health information technology experts, and representatives of national voluntary health associations that focus on neurological diseases and have demonstrated experience in research, care, or patient services.
  • Requires HHS to make information and analysis in the System available to federal agencies and to the public, including researchers; and to ensure that privacy and security protections applicable to the System are at least as stringent as the protections under the Health Insurance Portability and Accountability Act (HIPAA).
  • Authorizes Congress to appropriate $5,000,000 for each of fiscal years 2015 through 2019; and allows HHS to award grants to, or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out required activities.
  • Requires that HHS submit a report to Congress within 4 years of enactment that shall include information on: the development and maintenance of the National Neurological Diseases Surveillance System; the type of information collected and stored in the System; the use and availability of such information, including guidelines for such use; and the use and coordination of databases that collect or maintain information on neurological diseases.

Please ask your elected officials to cosponsor and support increased research of neurological diseases.

Read this post in its entirety:

Encourage Congress to Support Research of Neurological Disorders

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