Glossary

The following are descriptions of the terms, systems, and resources presented in TBI Data Collection.

Traumatic Brain Injury (TBI) Registry 
A registry is a method of systematic and ongoing data collection that is population-based (includes all cases of TBI in a defined population, such as 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 people with TBI to services. Legislative authority to identify people treated with a TBI, and in some states to contact them, is a key feature of a registry. 

Registries typically identify people with TBI shortly after they are admitted for medical care. They often require that specialized staff review the medical record and either enter the data or forward them to another location for data review and management. This allows for early identification of people with TBI, but reporting of cases is often incomplete and such a system can be costly. 

Several states have established TBI registries or central nervous system (CNS) registries (which capture both TBI and spinal cord injury information). Most of the TBI registries presented in this guide are not funded by CDC, but rather by their respective states through agency funds or trust funds. 

There is wide variability in purpose, legislative authority, scope, reach, capability, and function of these registries. For example, some strive to register every individual in the state who has sustained a TBI and others only register new cases or a sample of cases. Some state registries include children, while other states do not. Some registries serve solely as data collection systems, while others also link people with TBI to information or services. 

Note that some programs described by states, and reported here, as TBI registries may not fully meet the definition of a registry. For example, they may not be population-based. 

Two examples of states with TBI registries are Minnesota and Florida. 

Back to Top

Injury Core Capacity Development Program 
CDC funds 28 states to establish overall plans for injury control, including conducting injury surveillance focused primarily on tracking the causes of injury. Four of the 28 participating states also receive enhanced funding to monitor traumatic brain injury (TBI) as part of the injury surveillance component of the program. 

Two examples of states with Core State Injury Programs are Massachusetts and Minnesota. 

More information about Core State Injury Program > 

Back to Top

State Injury Indicators Program
For the past several years, CDC – in partnership with the Council of State and Territorial Epidemiologists and the State and Territorial Injury Prevention Directors’ Association – has coordinated the State Injury Indicators Program. This surveillance effort includes the voluntary participation of states that collect, analyze, and contribute data on specific injury indicators. 

Participation in this program can assist states in prioritizing and planning their injury prevention efforts. The data states collect include hospitalization data, death data, Behavioral Risk Factor Surveillance System (BRFSS) data, and Youth Risk Behavior Surveillance System (YRBSS) data for various injuries and risk factors, including TBI. The first report, published in December 2001, included data from 12 state health departments. The second report, which is currently being developed, will include calculated rates and data contributed from 26 states. 

This program counts a hospitalization as TBI-related only when it is coded as the first listed diagnosis, even though a diagnosis code for TBI could be found in other diagnosis fields. Because of this restricted definition of TBI, State Injury Indicators data underestimate the number and rate of TBI hospitalizations. 

Two examples of states that are involved in the State Injury Indicators Program are Texas and Utah. 

Download a copy of the State Injury Indicators Report.

Back to Top

Trauma Registry
A state’s central trauma registry can be a useful source of TBI data. The Alaska Trauma Registry, for example, is the main source of data for the state’s TBI surveillance. 

Using a trauma registry to collect TBI data can be advantageous because data collection, analysis, and dissemination are often timely. Additionally, the costs of data collection via trauma registry are often shared by hospitals. If a trauma registry is population-based, meaning that all trauma centers and acute-care hospitals in a state report to the registry, the system can be a potential source of population-based TBI incidence and outcome data. However, many trauma registries are not population-based as only select hospitals in the state report to them, resulting in incomplete geographic and population coverage. 

Another possible disadvantage to using trauma registries for collecting TBI data is that trauma centers often collect data on more severely injured people, such as those that are hospitalized for more than 48 hours. 

Since trauma registries may not include all TBI cases, it may be more useful to combine trauma registry data with data from other TBI data systems if they are available. States may be able to use trauma registries to identify people with TBI and link them to services early; however, this potential linkage mechanism has not yet been evaluated.

An example of a state that uses a trauma registry to collect TBI data is Alabama.

Traumatic Brain Injury (TBI) Surveillance Program
Surveillance is defined as systematic, ongoing, and rapid data collection using methods that are practical and uniform. A surveillance system should be population-based (include all cases of TBI in a defined population, such as a state).

CDC currently funds 12 states for TBI surveillance. In states with legal authority to contact people, TBI surveillance systems can be enhanced by adding registry functions, such as identifying individuals with TBI to link them to services or to determine their needs. CDC-funded surveillance systems use existing data systems – in most states, routine hospital billing information – to track TBI. For this reason, they are often less flexible than registries, though they tend to obtain a more complete count of the persons hospitalized with TBI in their state.

Two examples of states with TBI surveillance programs are New York and Oklahoma.

More information about CDC's TBI activities >

Back to Top