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Traumatic brain injury in the United States; the future of registries and data systems : summary and recommendations from the Expert Working Group, Atlanta, Georgia, July 1-2, 2002
  • Published Date:
    June 2005
Filetype[PDF-266.00 KB]


Details:
  • Corporate Authors:
    National Center for Injury Prevention and Control (U.S.), Division of Injury and Disability Outcomes and Programs.
  • Description:
    This report summarizes the comments, suggestions, and recommendations of a working group convened by the Centers for Disease Control and Prevention (CDC) to discuss the future of traumatic brain injury (TBI) registries and data systems. It is intended for policy makers, researchers, advocates, and public health professionals, including those from state health departments, interested in furthering the development of systems to collect data about people with TBI and to help those people learn about available services such as health care, employment training, and personal assistance.

    In the Children’s Health Act of 2000, Congress authorized CDC to develop a “National Program of TBI Registries” to collect data about TBI. Currently, CDC supports other TBI data collection systems, including TBI surveillance, that can also be used to identify people with TBI and help them get information about services.

    On July 1–2, 2002, CDC convened an expert panel of TBI researchers, advocates, registry administrators, and other professionals to discuss the future of TBI registries and data systems and to obtain guidance in the development of a “National Program of TBI Registries.”

    Meeting participants first reviewed background information about registries and existing CDC-funded TBI and injury data systems, including TBI surveillance. Second, they developed a simple working definition of a TBI registry and described its key functions: • Collect TBI data; • Identify people who sustained a TBI (maintaining personal identifiers and contact information); • Link people with TBI to needed information and services.

    Third, the panel used this definition as a framework to discuss whether TBI data systems, such as surveillance, might serve the important functions of a registry. Finally, they recommended ways that CDC could enhance currently funded TBI data systems to build TBI registries.

    Suggested citation: Langlois JA, Rutland-Brown W. Traumatic Brain Injury in the United States: The Future of Registries and Data Systems. Atlanta (GA): Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; 2005.

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