Data Collection

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As early as 1984, States began enacting legislation to gather data on brain injuries. Today, States may use a surveillance system, a trauma registry, a TBI registry, or may obtain information on injuries from hospital discharge or other State-based data sets to determine incidence and other information relating to TBI.

Jean Langlois, of the Centers for Disease Control and Prevention (CDC), distinguishes between a surveillance system and a registry with the following description: “A surveillance system is systematic and ongoing data collection using methods that are practical, uniform, and often focus on rapid data collection rather than complete accuracy; may or may not be population-based (includes all cases of TBI in a defined population, e.g., a State). A registry is a method of systematic and ongoing data collection that is population-based (includes all cases of TBI in a defined population, e.g., a State), includes personal identifying and contact information for each case, and may be used for follow-up of TBI cases over time and/or linking TBI cases to services.”¹

Thirty-seven States have trauma registries that encompass all types of injuries. Hospitals that are designated as trauma centers report information including method of transportation to the trauma center, severity of injury, cause of injury, demographics, care and cost of care provided. Trauma registries tend to provide information on the most seriously injured people, and generally, trauma registries are used to monitor and evaluate care at the hospital, regional, and State level.

Seventeen States have TBI-specific registries that are established by statute. In general, the legislation sets forth:

which department or agency is responsible for data collection;
confidentiality requirements;
which entities (e.g., hospitals or trauma centers) must report cases to the registry; and
what information must be reported.

Often the registry collects basic demographic information and ICD-9 or ICD-10 (International Classification of Diseases 10th edition) codes. Some States also collect Glasgow coma scores, the cost of care, cause of the TBI, other contributing factors, such as use of alcohol or safety belts, level of disability upon discharge, and disposition. Some States have both a trauma and TBI-specific registry.

In 17 States the TBI registry legislation mandates hospitals to report the information, usually to the State health department, within a certain time frame after the person has been discharged from the hospital. Most State laws do not provide a penalty for failure to report or to report in a timely fashion. Similarly, States may differ in their information reporting criteria. In many States, a patient must be admitted to the hospital for at least one night, and in some cases two nights, to trigger a reporting requirement. In some States, death in the emergency department generates a report, while emergency department evaluation and release does not.

Using the data submitted by hospitals, the State Agency analyzes the aggregate data and often compiles and publishes the information in an annual or bi-annual report. The report may be posted on the State Web page or otherwise circulated to Lead Agencies, Advisory Boards/Councils, advocates and others who use the information for planning and implementing service delivery and prevention efforts within their State.

Eight States that collect personal identifiers, such as name and address, use this and other information to link individuals with brain injury to case management/service coordination or other available services. This follow-up contact usually takes place while the individual is in the hospital or within three months of the occurrence of the injury. States may also use personal identifiers or data from other State administered systems, such as hospital discharge, trauma registry, or death certificate, to assist policy makers within the State and to assist CDC in providing national estimates. States may also link files from several data sets, including Death Certificate, Ambulance Trip Ticket, and State Highway Patrol Data with TBI registry and trauma data to obtain a more comprehensive set of information relating to the injury.

In the fall of 2003, CDC published a Web-based data collection resource.

Click here to order a copy of our latest “Guide to State Government Brain Injury Policies, Funding and Services” to learn more about TBI Data Collection and other State systems components.

¹. Langlois, J, Centers for Disease Control and Prevention, personal contact, July 8, 2003.