Traumatic Brain Injury in the United States: The … Brain Injury in the United States: The Future of Registries and Data Systems This report is a publication of the National Center

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 1ndash2 2002

Prepared by

Division of Injury and Disability Outcomes and Programs

National Center for Injury Prevention and Control

Centers for Disease Control and Prevention

US Department of Health and Human Services

June 2005


This report is a publication of the National Center for Injury

Prevention and Control Centers for Disease Control and Prevention


Julie Louise Gerberding MD MPH

Director


Ileana Arias PhD

Acting Director

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

Editors

Jean A Langlois ScD MPH



Wesley Rutland-Brown MPH



Acknowledgements

The editors wish to acknowledge the valuable contributions of the

following people to the meeting on the Future of Traumatic Brain

Injury Registries and Data Systems and to the production of this

report Doug Browne Jacqui Butler Michelle Huitric Angela Marr

Jane Mitchko Teri Ricker and the staff of the Office of Communication

Resources National Center for Injury Prevention and Control CDC

The reason for collecting analyzing and disseminating information on injuries is to

control those injuries and their effects

Collection and analysis should not be allowed to consume resources

if action does not follow

mdash adapted from William H Foege Former Director Centers for Disease Control and Prevention 1976

Group Participants

Christine Baggini Director of Family Resources Brain Injury Association of Virginia Richmond Virginia

Allan Bergman President and CEO Brain Injury Association of America McLean Virginia

Susan Connors Executive Director National Association of State Head Injury Administrators

Bethesda Maryland

John Corrigan PhD Professor Department of Physical Medicine and Rehabilitation

Ohio State University Columbus Ohio

Thom Delilla Bureau Chief Brain and Spinal Cord Injury Program Florida Department of Health Division of EMS and Community Health Resources

Tallahassee Florida

Lt Betty Hastings Director Traumatic Brain Injury Program Maternal and Child Health Bureau Health Resources and Services Administration Rockville Maryland

Jean A Langlois ScD MPH (Moderator) Senior Epidemiologist Health Outcomes and Disability Prevention Division of Injury and Disability Outcomes and Programs


Centers for Disease Control and Prevention Atlanta Georgia

Dave Murday PhD Assistant Director Center for Health Services amp Policy Research University of South Carolina School of Public Health

Columbia South Carolina

Anne Rohall Esq Director of Government Relations Brain Injury Association of America McLean Virginia

Pat Sample PhD Associate Professor Department of Occupational Therapy Colorado State University Fort Collins Colorado

Karen A Schwab PhD Statistician Defense and Veterans Brain Injury Center Uniformed Services University of the Health Sciences

Bethesda Maryland

Anbesaw W Selassie DrPH Assistant Professor Department of Biometry and Epidemiology Medical University of South Carolina Charleston South Carolina

Mary Stuart ScD Chair Department of Sociology and Anthropology University of Maryland Baltimore County Baltimore Maryland

Michael Weinrich MD PhD Director National Center for Medical Rehabilitation Research

National Institute for Child Health and Development

National Institutes of Health Bethesda Maryland

Table of Contents

Executive Summary1

Background 3

Registries or Surveillance

Background 7

What is a Registry 7

Examples of TBI Registries 10

Working Definition of a Registry12

Other Data Systems13

Recommendations

General 18

Developing a National System of TBI Registries18

Summary 30

References 31

Appendices

Appendix 1 Additional Resources33

Appendix 2 Websites by Topic34

Appendix 3 Other Websites36

Executive Summary

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 Childrenrsquos Health Act of 2000 Congress authorized CDC to develop a ldquoNational

Program of TBI Registriesrdquo 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 1ndash2 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 ldquoNational Program of TBI Registriesrdquo

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

bull Collect TBI data

bull Identify people who sustained a TBI (maintaining personal identifiers and contact information)

bull 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

1

The expert panel members noted that TBI registries do provide useful information about TBI

in some states However because of the CDCrsquos prior work in developing and implementing

standard population-based data collection (surveillance) in most states and the greater cost

of implementing most registries they agreed that the expansion of state-based TBI data

collection efforts could best be facilitated by expanding and enhancing existing TBI and

injury surveillance data systems They also recommended that CDC place a high priority

on developing state-based data systems that can help link people with TBI to needed

information and services Meeting participants also recommended a wide range of other

activities that would enhance TBI research and programs

2

Background

The Future of Traumatic Brain Injury (TBI) Registries and Data Systems

Purpose of the Report

On July 1ndash2 2002 the Centers for Disease Control and Prevention (CDC) convened an

expert working group to discuss ldquoThe Future of TBI Registries and Data Systemsrdquo This

report documents the grouprsquos comments and suggestions

Meeting Goals and Objectives

CDC convened the meeting to obtain guidance in responding to new language in the

Childrenrsquos Health Act of 2000 which charged the agency with developing a ldquoNational

Program of TBI Registriesrdquo (See text box pg 6 for details about legislation authorizing

CDCrsquos TBI activities)

There were several objectives for the meeting

bull Develop an operational definition for the term registry

bull Discuss how CDCrsquos current TBI data collection activities might serve as the basis

for developing a new registry

bull Recommend future CDC activities

Meeting Participants and Process

The 13 participants included TBI researchers advocates registry directors and

representatives from state and federal government agencies With input from the

Brain Injury Association of America (BIAA) the National Association of State Head

Injury Administrators (NASHIA) and the National Institutes of Health (NIH) CDC

selected invitees based on their experience and potential to contribute to a greater

understanding of the need for TBI data systems such as registries and the best

approaches to developing state-based data systems At the time of the meeting

two participants were involved in managing state-based TBI registries in Florida

and Virginia one participant was the principal investigator for both a CDC-funded

statewide TBI surveillance system and a TBI follow-up registry in South Carolina

3

For the first two objectives CDC staff prepared background material for discussion including

a draft definition of a registry and an overview of CDCrsquos current TBI data collection activities

The meeting began with an overview of this material followed by presentations by meeting

participants who were directly involved in managing TBI registries or surveillance systems

These participants presented information about their programs and answered questions

For the remainder of the first day participants discussed the information from the background

presentations A professional note taker recorded participantsrsquo comments and suggestions

On the second day the moderator presented a synthesis of the suggestions for review and

revision by the participants

This report documents the final summary of comments and recommendations by working

group members For some sections more detailed information references and other

materials have been added to clarify and update the information presented at the meeting

Readers of this report should also consult the companion website Traumatic Brain Injury

Data Collection at wwwcdcgovncipcprofilestbi This site provides detailed information

about state-based TBI data systems including those discussed at the expert meeting

Summary of Presentations

CDC staff and selected meeting participants presented the following background information

The Need for TBI Data Systems or ldquoRegistriesrdquo

According to national statistics more than one million people in the United States survive a

traumatic brain injury each year and at least 80000 of them experience long-term disability

as a result of their injuries (Thurman et al 1999)

4

Before states can adequately respond to this important public health problem each state

must determine the number and characteristics of people affected categorized by age

sex race etc Registries in Florida and Virginia for example have proven useful for this

purpose many other states have successfully used various other approaches to collecting

information about people with TBI Regardless of the approach advocates policy makers

and TBI service providers agree that TBI data must be specific to each state to effectively

inform primary prevention activities policy development and planning to ensure adequate

services for people with TBI

The Childrenrsquos Health Act CDCrsquos Charge to Develop TBI Registries

Each state needs TBI information about its residents Recognizing this need Congress in

the Childrenrsquos Health Act of 2000 authorized CDC to develop a ldquoNational Program of TBI

Registriesrdquo The objective is for CDC to ldquomake grants to states to operate the statersquos

traumatic brain injury registryto collect [TBI] data about the demographics and clinical

characteristics of persons hospitalized with TBIrdquo (See text box pg 6 for details about

legislation authorizing CDCrsquos TBI activities)

5

Legislation Authorizing CDCrsquos TBI Activities

The TBI Act of 1996 (PL 104-166)

In 1996 the US Congress passed Public Law 104-166 the Traumatic Brain Injury Act

This Act required CDC to

bull Further develop uniform TBI reporting systems among states

bull Submit a report to Congress about TBI incidence and prevalence

(National Center for Injury Prevention and Control 1999b)

(For actual language go to httpthomaslocgovbssd104d104lawshtml

Select the range 104-151 to 104-200 and click search Scroll down to 166 Select text or pdf)

The Childrenrsquos Health Act of 2000 (HR 4365)

In 2000 Congress passed TBI Act amendments which required CDC to

bull Disseminate national information on the incidence and prevalence of TBI

bull Provide information in primary care settings concerning the availability

of state-level services

bull Develop a national education and awareness campaign

bull Develop a National Program for TBI Registries Make grants to states for operating

the statersquos traumatic brain injury registry and collect data such as the following

Demographic information deg

Circumstances of injury deg

Source of the information dates of hospitalization and treatment date of injury deg

Information characterizing clinical aspects of the injury including types of deg

treatment and services used

(For actual language look at Title XIII ndash Traumatic Brain Injury at

httpthomaslocgovcgi-binbdqueryzd106HR04365 Select text or pdf)

6


Considerations in Implementing the Childrenrsquos Health Act

Background

Registries do provide useful data about TBI in some states However several factors should

be considered in determining the best approach to developing a national program of TBI

registries First as of January 2005 CDC supports injury data collection systems in more than

30 states including TBI surveillance in 11 of these states Second although the need for

national data on the impact of TBI in the United States is often used to support the need for

a national registry system CDC has routinely and successfully used existing national data sets

maintained by the National Center for Health Statistics to meet that need (Thurman et al

1999) Third although not specifically stated in the authorizing language CDC supports the

idea that where possible TBI data systems should also provide information about the outshy

comes and service needs of people with TBI and link those individuals to needed services

such as personal assistant services transportation or help finding employment TBI service

agency staff advocates and other professionals also support this view Finally in addition to

duplicating other data collection efforts the development of a program of registries separate

from current CDC data collection efforts could be very costly CDC is charged with conductshy

ing a wide range of other TBI-related activities with limited funding totaling approximately

$57 million in FY 2005

What Is a Registry

General Definition

A registry can be defined as ldquoa collection of data about a particular group of people who

share a common personal characteristic for example development of the same diseasehelliprdquo

(Feinstein 1998 p475) However there is wide variation in the type and nature of registries

which can range from a simple list of people affected by a disease or condition to a complex

system of identifying contacting and providing case coordination to help people with the

condition get the services they need

7

Characteristics and Functions of a TBI Registry

The expert panel members discussed the following background information about registry

functions and funding mechanisms

bull Data collection

TBI registries vary in the type and completeness of the data collected Collecting

data about people who experience a TBI is the most basic function of a registry

TBI registries typically collect information about demographics (eg age sex race)

clinical characteristics (eg the type and severity of the injury to the brain) and the

external cause of the injury (eg fall motor vehicle crash) Data about other factors

that can influence recovery (eg the presence of other health conditions) are

sometimes collected

bull Identification

A key feature of a registry is legal authority to identify people with the condition

and maintain and use their personal identifying information to contact them

Contact is usually initiated to request their enrollment in research studies or to

provide them with helpful information about available services TBI registries

typically identify patients soon after they are admitted for medical care

The registries usually require specialized staff to review medical records and either

enter the data into a special data system or forward the data to another location for

management This allows for early identification of people with the condition ease

of tracking them over time because accurate contact information is obtained and

flexibility in the amount and type of data collected However unless extensive

resources and rigorous methods are applied the reporting of cases is often

incomplete Such a registry can also be costly For example CDC provides

about $35 million per year to fund operation of state cancer registries (personal

communication PM Talboy CDC 2002) Each state also contributes funding

to support this activity (See the CDC National Program of Cancer Registries

website wwwcdcgovcancernpcr)

8

bull Linkage to services

Helping link people with TBI to services is an important function of a TBI registry

according to experts in the field (National Center for Injury Prevention and Control

1999a) Assistance in obtaining services is particularly important for people with TBI

because cognitive problems resulting from their injury make it difficult for them to

find and access the services they need to compensate for these problems (General

Accounting Office 1998)

bull Follow-up data collection

Contacting and interviewing people with TBI to find out about the nature and

extent of the problems they experience as a result of their injury can help increase

knowledge about the factors that influence recovery and the services these people

need TBI often results in long-term disability that interferes with performance of

routine daily tasks return to work or school and successful community reintegration

(National Institutes of Health 1999) Quantifying these problems can provide

information needed by state agencies to plan for and justify funding for the services

that residents with TBI need

bull Funding

Most TBI registries currently rely heavily on state funding dedicated to supporting

the registry including some that receive funding from trust funds for example from

fines for driving under the influence

9

Examples of TBI Registries

The following is a brief summary of basic information about selected TBI registries

States

The Florida Brain and Spinal Cord Injury Program (FBSCIP) supports a TBI and Spinal Cord

Injury (SCI) registry that identifies moderately to severely injured people with TBI while

they are still in the hospital The program focuses on case management to facilitate

coordination and payment for rehabilitation services needed for their return to the

community Florida residents with mild TBI also have access to assistance through

contractual services with the Brain Injury Association of Florida and special projects

(personal communication K Shields FBSCIP June 2004) The staff of the Florida registry

indicated that all people hospitalized for moderate to severe TBI are routinely reported

to the registry (personal communication T DeLilla FBSCIP July 2002) (See the Florida

Brain and Spinal Cord Injury Program website wwwdohstateflusWorkforceBrainSC)

Virginia operates a TBISCI registry in which hospitals report information about new cases

of TBISCI to a centralized data center at discharge (personal communication C Baggini

Brain Injury Association of Virginia July 2002) Individuals of all ages who are treated for

mild moderate or severe injuries including those treated and released from a hospital

emergency department are expected to be reported to the registry Outreach material is

sent to those who are reported and subsequent information and referral services are

provided to those who request them Not all hospitals report all cases to the Virginia

registry (personal communication C Baggini Brain Injury Association of Virginia July 2002)

Although reporting to the Virginia Central Registry for Brain Injury and Spinal Cord Injury

is mandated by the Code of Virginia there are no sanctions available to ensure compliance

This is a common problem for registries that cannot enforce hospital reporting and for which

funding is limited (See the Virginia Central Registry website wwwbiavnetcentral_registryhtm)

10

The exact costs of operating registries are difficult to calculate because various tasks may

be performed by different agencies facilities or personnel The Florida TBI registry relies on

funding from the Brain and Spinal Cord Injury Rehabilitation Trust Fund Florida estimates the

cost of TBI data collection only (excluding case coordination and other registry functions) at

$75000 per year The Virginia registry is supported by state funding Virginiarsquos costs for TBI

data collection only are reported to be approximately $125000 per year

Military

The Defense and Veterans Brain Injury Center (DVBIC) supports a registry and tracking

system that identifies and follows consenting military personnel and veterans who were

diagnosed with and treated for a TBI Clinicians in designated facilities including three

military medical centers four veteransrsquo affairs medical facilities and one civilian community

reentry facility are asked to report all people hospitalized with a TBI to a central registry

Medical centers also collect information about patients treated and released from

emergency departments and outpatient clinics An important function of the registry

is to help people with TBI obtain appropriate services receive follow-up clinical contacts

and receive appropriate educational materials (For more detail see wwwdvbicorg)

11

Working Definition of a Registry Key Registry Functions

Based on the information presented previously the expert panel concluded that the working

definition for a TBI registry should include the following primary functions (also shown in Figure 1)


bull Identification (maintaining personal identifiers and contact information)

considered a key function that distinguishes a registry

bull Linking people to services (helping them get information about available services)

Figure 1 Model for Building TBI Registries

Linking People to Services

Identification (Personal identifiers and contact)

Data Collection (Surveillance)

Figure 1 illustrates the potential for registry systems to be built on existing TBI data

collection systems (shown at the base of the figure) by adding to the basic data

collection function the functions of identification and linking people to services

Three secondary functions were considered

bull Data linkage Linking registry information to data from other sources such as

Medicaid claims data in order to track the use of social services and related costs

Including in the data system personal identifiers such as social security numbers

can facilitate such linkages

bull Follow-up data collection Contacting people who have had a TBI and interviewing

them to find out about health and other problems they may be experiencing

bull Evaluation Evaluating whether people with TBI who were linked to services were

satisfied with the services and benefited from them

12

Other Data Systems

In addition to the registries described previously other state-based data systems have proven

useful or shown the potential to provide needed information about TBI The primary sources

of state-based TBI data are described below

TBI Surveillance

TBI surveillance is the most promising data system that could be enhanced to serve the

functions of a TBI registry For that reason the description of surveillance by registry function

(below) is more detailed than that of the other data system mentioned Additional information

about TBI surveillance is available in the article ldquoTraumatic Brain Injury-Related Hospital

Dischargesrdquo (Langlois et al 2003) from this reportrsquos companion website about TBI data

systems (see data systems website wwwcdcgovncipcprofilesTBI) and in the

CDC Annual CNSI Data Submission Standards (Marr and Coronado 2004)


Definition and description of TBI Surveillance

Surveillance is defined as routine ongoing collection of data about people who

sustained a TBI States that conduct TBI surveillance process and analyze TBI data

obtained primarily from statewide mortality data sets and existing administrative

data sets including statewide hospital discharge data sets that were originally

developed for billing purposes Thus TBI surveillance differs from most registries

because it does not require a dedicated hospital-based system for collecting data

about people hospitalized with TBI As a result surveillance also has the advantage

of being low cost in relation to the completeness of case ascertainment and the

quality and extent of the data obtained As of January 2005 CDC funded 11

states to conduct TBI surveillance Each state received $80000 per year to process

basic data about the number and demographics of people hospitalized with TBI in

their state Six of these states also received $65000 to abstract additional

information from medical records

13

TBI registries and surveillance vary in the extent to which they capture all cases

of TBI that occur within a state Despite some limitations in case identification

CDC-funded TBI surveillance tends to have more complete case identification

than TBI registries because surveillance data are routinely collected for billing

purposes Thus surveillance data are described as population-based that is

these data include all or nearly all of the hospitalized TBI cases in a geographically

defined area (or state) allowing for an accurate assessment of the impact of TBI in

that area Ideally TBI registries should also be population-based However even

with state mandates many registries underreport TBI cases (See text box pg 17

for additional information about population-based data systems)

Limitations of data collection using TBI surveillance

Timeliness deg

TBI surveillance states vary in the amount of time required to obtain the

administrative data sets The average time is currently 12 to 18 months after

the close of the calendar year

Flexibilitydeg

Because most states use existing administrative data sets the information that can

be collected is limited to what is already routinely collected Some state surveillance

systems abstract additional information from hospital records but that information is

limited to what is recorded

Completeness of case ascertainmentdeg

Although considered to be population-based the TBI surveillance system does not

capture ldquoallrdquo cases For example because most state surveillance systems funded by

CDC collect only data on deaths and hospitalizations people with TBI who are not

admitted to a hospital are not included

14

Even states that collect data on people who are treated and released from the

ED will miss those who do not seek and receive medical care or who are seen

by private doctors

State-based hospital discharge data systems frequently miss people treated in

prison hospitals military and veteransrsquo hospitals Indian Health Service hospitals

or hospitals in another state However these omissions typically result in a relatively

small percentage of hospitalized cases that are not identified

Availability of data deg

States vary in the kind and amount of TBI data that are available Some state data

systems have missing cause of injury codes (E codes) for a large proportion of data

E codes describe for example whether an injury resulted from a fall or motor

vehicle crash

bull Identification

Some states with TBI surveillance have legal authority to identify and contact people with

TBI that reside within the state This allows states to collect and keep information such as

names and addresses within the surveillance data set for collecting follow-up data or

linking them to services


TBI surveillance systems in states with legal authority to identify and contact people with

TBI can serve an important role in linking state residents with TBI to information about

available services With CDC funding the Colorado Department of Health and the

Environment in collaboration with the Colorado State University the Brain Injury

Association of Colorado and the Colorado HRSA-funded TBI services project investigated

whether surveillance system data could be used to help link people with TBI to services

Using their legal authority the Colorado TBI Surveillance Program identified from the

surveillance system a sample of people hospitalized with TBI

15

Project staff then sent them letters about a new 800 number with information about

available services This effort resulted in a fourfold increase in the number of calls to that

number (personal communication P Sample Colorado State University 2002)

These efforts demonstrate the potential for TBI surveillance to be used to help people

with TBI find out about and access needed services As of January 2005 an evaluation of

the effectiveness of the 800-number project to find out whether people with TBI who

called the number actually got the services they needed is in progress

bull Other functions

Follow-up data collection

Colorado and South Carolina have conducted multiyear follow-up studies of a representative

sample of people with TBI in their states Specifically they successfully contacted a sample

of people identified through surveillance and interviewed them by telephone to learn

about their TBI-related problems and service needs (Brooks et al 1997 Pickelsimer et al 2002)

(See the South Carolina Traumatic Brain Injury Registry website sctbifrmuscedu)

Core Injury Surveillance

As of January 2005 CDC funds 28 states for injury surveillance These programs must have

the ability to access and analyze injury data sets recommended by the State and Territorial

Injury Prevention Directorsrsquo Association (STIPDA 2003) The Core injury programs categorize

and analyze injury data by external cause (eg motor vehicle crashes falls) However

because many of the data sets used for Core injury surveillance are the same as those

used for TBI surveillance analysis of TBI data by these programs is feasible Some states

including Massachusetts include analysis of TBI data as part of this effort and some report

basic TBI rates as part of the State Injury Indicators project in which CDC staff in collaboration

with members of the State and Territorial Injury Prevention Directorsrsquo Association advise

states on the methods for calculating rates of injury including TBI (See the Indicators

website wwwcdcgovncipcpub-resindicators)

16

These efforts show the potential for existing injury surveillance and other data collection

efforts to form the base for expanding TBI surveillance to other states because the states

involved in Core injury surveillance or the Indicators project already have access to the basic

data needed for TBI surveillance By 2006 CDC anticipates that all states participating in

Core injury surveillance will analyze and report separately their data for TBI (See the Core

State Injury website wwwcdcgovncipcprofilescore_state)

Definition of Population-Based

ldquoPopulation-basedrdquo is an epidemiologic term describing a registry or other data collection

system that has information about ldquoallrdquo cases of a specific disease or injury in a geographically

defined area that relates to a specific population For example the population-based TBI

surveillance system in Colorado identifies each year all state residents hospitalized with TBI

within the state whose billing information is included in the statewide hospital discharge

data set However population-based does not mean that everyone who has ever had a

TBI is included in the registry or surveillance data set

bull Population-based TBI registries and surveillance systems typically focus on hospitalized

cases therefore they provide population-based data only about the TBI population

that is hospitalized

bull People who were injured before the system was established those not admitted to the

hospital persons who were misdiagnosed and those for whom the TBI diagnosis is

missed (including people with other more severe injuries or health conditions) are

not routinely included in registries and surveillance systems reporting only about

persons hospitalized

bull Some registries with the primary goal of helping people get services identify cases in

other ways for example by allowing self-reported cases demonstrated by the Defense

and Veterans Brain Injury Centerrsquos registry The advantage of this type of registry is that

more people can benefit from potential linkages to services and more information on

the prevalence (the number of people living with TBI-related problems) may be

obtained A disadvantage is that accurate information about the injurymdashfor example

a clinical assessment of the severity of the TBImdashis lacking for self-reported cases

17

Recommendations of the Expert Panel

Following the presentations and discussion summarized above expert panel members

agreed upon the following recommendations

General

At both the state and national levels CDC should continue to support and conduct

activities to collect analyze and use population-based TBI data and data systems

1 To determine

Incidence and prevalence of TBI-related disability and trends over time deg

External causes of and risk factors for TBI deg

Outcomes of TBI including information about the natural history of recovery deg

Service needs of people with TBIdeg

2 To help link people with TBI to information about

Traumatic brain injury in general including what to expect during recovery deg

Available services deg

CDC should place a high priority on developing state-based data systems that can help

people with TBI get needed information and services

Developing a National Program of TBI Registries

The expert panel noted that TBI registries provide useful information about TBI in some

states However because of the CDCrsquos prior work in developing and implementing standard

population-based data collection (surveillance) in the majority of states and the greater cost


collection efforts could best be facilitated by building on existing TBI and injury surveillance

data systems States with legal authority to identify and contact people with TBI could

enhance these systems to add functions such as linkage to services or follow-up to find out

about TBI outcomes

18

Specific recommendations for implementation at state and national levels follow

Data Collection

bull State level

1 CDC should fund more states to collect analyze and report TBI data

CDC should work to make sure all 50 states the District of Columbia and US deg territories have the capacity to analyze TBI death and hospitalization data This

could be accomplished by continuing to fund TBI surveillance states and by

increasing funding to Core injury surveillance states so that the Core states

could expand their activities to include TBI surveillance Combining Core injury

surveillance and TBI surveillance into a single surveillance effort in each state was

also recommended (Note Beginning in August 2005 CDC will fund approximately

30 states for a five-year cooperative agreement that combines Core injury and

TBI surveillance (Program Announcement 05027 ldquoPublic Health Injury Surveillance

and Prevention Programrdquo)

2 CDC should decrease the lag time between identifying and reporting TBI surveillance data

Currently lags of 12 to 18 months or greater occur before states have access deg to TBI data CDCrsquos review process further delays reporting of data These lags

should be reduced to the greatest extent possible

3 CDC should facilitate consistency and comparability of data across TBI surveillance

and research This can be accomplished by working with other agencies researchers

and experts tondash

Promote the use of a uniform TBI case definition deg

Encourage the use of all diagnosis fields in studies that identify TBI cases from deg hospitalization or emergency department data Some studies identify cases only

from the first-listed diagnosis Using data from only one field excludes those with

diagnoses listed in the other fields and underestimates the number of people with TBI

19

Develop a common taxonomy for collecting key surveillance and follow-updeg study data including

Services used by people with TBI Severity including the strengths and limitations of the ICDMAP computer

program (which translates ICD-9-CM diagnosis codes into AIS codes and

severity scores) (MacKenzie et al 1989) Outcomes (The National Center for Medical Rehabilitation Research [NCMRR]

is developing definitions for research purposes as part of development of a

Clinical Trials Network that may be useful for other studies See the TBI

Clinical Trials Network wwwtbi-ctorg) Preexisting conditions including previous TBI A standard definition for other trauma (the Barell Matrix may be useful

see wwwcdcgovnchsaboutotheracticebarellmatrixhtm) Recommended time intervals for collecting follow-up data Employment

Incorporate the information above into guidelines for conducting surveillance and deg collecting follow-up data then the guidelines should be widely disseminated

Guidelines should also apply to TBI data collection efforts not funded by CDC

bull National level

1 CDC should continue to use existing national data sets to estimate the impact

of TBI in the United States (Note Detailed national data were recently analyzed

and published in a CDC report [Langlois et al 2004])

As part of this effort CDC should evaluate the relative usefulness of the following deg national data sets maintained by the National Center for Health Statistics (NCHS)

to determine their potential for monitoring TBI rates and trends in the US

National Vital Statistics System (NVSS)ndashmortality data National Hospital Discharge Survey (NHDS)ndashhospital discharge data from

a representative sample of US hospitals

20

National Hospital Ambulatory Medical Care Survey (NHAMCS)ndashdata from

a representative sample of hospital emergency departments National Health Interview Survey (NHIS)ndashdata on the health status of a

representative sample of US residents obtained by telephone interview

For more information about NCHS data sets see wwwcdcgovnchs

Identifying and Contacting People with TBI

1 CDC should consider ways to help develop and encourage comparable and

consistent legislation within states

2 CDC should help states interpret and apply provisions of the Health Insurance

Portability and Accountability Act (HIPAA) to make sure surveillance and other

TBI-related data collection efforts can continue while maintaining confidentiality

of the data

Linking People with TBI to Services

CDC has funded several small pilot projects to explore the potential for using TBI surveillance

data systems to link people with TBI to information about services

1 CDC should support additional small linkage pilot projects in states States that

demonstrate effective linkage activities should receive ongoing support

2 CDC should promote the development of linkages by conducting a workshop

for states with interest and potential to conduct such data linkages Participants

should include

21

CDC grantees from states with experience conducting linkage projects deg States interested in developing new linkage projects deg Representatives of the National Association of State Head Injury Administrators (NASHIA) deg

Brain Injury Association of America (BIAA) state affiliates deg

Grantees of the Health Resources and Services Administration (HRSA) TBI State deg

Grant Program

3 CDC should support the development pilot testing and evaluation of ways to link

to services people with mild TBI and others who are not routinely identified or are

missed by existing registries and surveillance programs

4 CDC should facilitate development of a national linkage infrastructure by supporting

the establishment of a national one-call information center with an 800 number that

automatically connects callers to information and resources about TBI in their home

states (Note CDC began implementing this effort in September 2004 by funding

the Brain Injury Association of America to conduct a three-year pilot project)

Follow-up Data Collection

bull Children

CDCrsquos highest priority should be to conduct follow-up studies to document long-term

disability associated with TBI among children Specifically CDC should

1 Fund a detailed follow-up study of school-age children including children with

mild TBI seen in an emergency department but not admitted to a hospital

2 Consider collaborating with the US Department of Education on a study to identify

children with TBI in schools The numbers of children with TBI reported by special

education programs is much lower than would be expected based on the numbers

of children who sustain a TBI each year thus better estimates are needed

3 Explore the use of existing data sets for identifying children with TBI in schools

22

4 Develop simplified follow-up methods for collecting information about TBI outcomes

among children These measures should apply in a wide range of settings

5 Support research to develop methods and conduct studies that retrospectively

identify children (and adults) with a prior diagnosis of TBI

6 Build state capacity to conduct simplified follow-up data collection among

school-age children with TBI This would be facilitated by developing and publishing

guidelines based on experience in conducting the follow-up study of TBI outcomes

among school-age children described previously

7 Fund research to develop methods for conducting follow-up studies of children

younger than school age

8 Monitor progress and provide input to the planned NIH National Childrenrsquos Study

(NCS) to include TBI as a topic of investigation (Note CDC staff participated in

the planning and moderating of a meeting in September 2003 to discuss the

potential for studying mild TBI in children as part of the NCS)

9 Fund research on outcomes of sports-related injuries and intentional injuries

among children

bull Adults

1 CDC should evaluate the impact of the currently funded TBI follow-up study in South

Carolina The methods findings and lessons learned should be disseminated widely

2 CDC should develop simplified follow-up methods for application in a wide range

of settings especially health departments These should be based on the methods

developed for the Colorado and South Carolina follow-up studies

23

3 Future follow-up studies should use new approaches to assessing health status (including the Short-Form-36 [SF-36] Health Survey [Medical Outcomes Trust Inc 20 Park Plaza Suite 1014 Boston Massachusetts 02116]) These new versions are administered by computer they are based on patterns of response and reduce participantsrsquo response burden by eliminating the need to answer all questions

4 CDC should help build state capacity to apply simplified follow-up methods that assess TBI outcomes among adults

5 TBI researchers at CDC should learn more about disability measures being developed and used by other researchers

Communicate with researchers who develop participation measures and support deg or provide input to the development of such measure

Familiarize themselves with the International Classification of Function Disability deg and Health (ICF) (see www3whointicficftemplate) and other developments in the disability research field

Other Recommendations

Experts identified several other efforts which could advance the TBI field

bull Disability and other outcomes of TBI

1 CDC should support research on the effects of aging on health among people already living with TBI-related disability

2 CDC should consider supporting research on mental health depression and post-traumatic stress disorder (PTSD) and their association with TBI

3 CDC should in response to the Childrenrsquos Health Act of 2000 support studies of the incidence of TBI and prevalence of TBI-related disability among people in institutions (ie nursing homes psychiatric facilities and prisons) (Note As of January 2005 CDC has funded four pilot studies to identify people in prisons and nursing homes who have sustained a TBI)

24

bull Data linkage

1 CDC should build state capacity to link TBI data to other data sets such as

Medicaid (includes nursing homes) Medicare and other health payers deg Special educationdeg Vocational rehabilitation deg Mental healthdeg Social Security Administrationdeg Juvenilecriminal justice systemsdeg Foster care deg

2 CDC should develop a strategic plan for research that includes linking data from TBI data systems to other data sources Linking these data could provide policy-relevant information especially cost data to support the need for increased state and federal funding for TBI services Evidence about the cost of providing services compared with the cost of providing financial assistance to people who do not receive services can be very powerful in supporting the need for and benefits of services

3 CDC should consider holding a workshop for states with interest and potential

to conduct such data linkages (eg state health department personnel

university-based researchers and funding agencies) CDC staff could present

potential research topics and methods for collecting policy relevant information

4 CDC should fund a study of states with registries that have been successful in

developing state and federal resources for people with TBI to identify lessons

learned regarding the use of data and other factors that might be useful to other

states and TBI advocates (Note In 2003 CDC funded a small study to evaluate

and report lessons learned from the Florida TBI registry and the results have been

published in a peer-reviewed journal [Stuart 2004])

25

5 CDC should explore the possibility of linking data sets used to track the costs of

other disabling conditions to determine whether similar methods are applicable

to tracking the costs of TBI

6 CDC should support TBI research using qualitative research methods These methods

are particularly useful for evaluating programs and for investigating TBI-related issues

that have not been thoroughly studied to inform methods for more detailed

epidemiologic studies (Note In 2000 CDC funded qualitative studies in Colorado

[Sample 2004] and South Carolina [Leith 2004] to determine the feasibility of linking

people with TBI in those states to information about services and in Florida to

determine the lessons learned from their TBI registry [Stuart 2004] CDC also

supported qualitative research to investigate violence among people with TBI

A peer-reviewed publication from this effort is in progress)

bull Collaboration with other agencies

Health Resources and Services Administration (HRSA)

1 CDC should continue collaborations between its grantees and grantees of the HRSA

TBI Program HRSA grantees are funded to develop the infrastructure for TBI services

within their states These collaborations will help HRSA grantees and state health

department injury prevention personnel bridge the ldquocultural gaprdquo between the injury

prevention and long-term disability communities and help both organizations

understand the mutual benefits of working together

2 CDC should collaborate on TBI-related issues with the HRSA Emergency Medical

Services for Children (EMSC) program EMSCrsquos goals are to ensure that state-of-theshy

art emergency medical care is available for all ill or injured children and adolescents

that pediatric services are well integrated into an emergency medical services (EMS)

system and that the entire spectrum of emergency services including primary

prevention of illness and injury acute care and rehabilitation are provided to

children and adolescents A federal grant program supports state and local action

(For more detail see wwwaskhrsagovorgdetailcfmid=252)

26

American College of Surgeons (ACS)

1 CDC should collaborate with the American College of Surgeonsrsquo Committee on

Trauma on TBI-related issues This organization works to improve the care of injured

and critically ill patientsndashbefore en route to and during hospitalization (For more

detail see wwwfacsorgaboutcorpprohtml)

Mild TBI

bull Taxonomy

1 CDC should explore the potential for finding and promoting the use of an accurate

term so that effective educational messages can be developed ldquoMildrdquo TBI refers to

the severity of the injury to the brain itself at the time of initial diagnosis Concussions

are frequently described as mild TBIs However people with brain injuries that

appear mild at the time of diagnosis can experience consequences that are not mild

including problems with memory behavior and emotional control Studies are

needed to show how the public currently perceives the term ldquomild TBIrdquo so that

educational messages describing the potential long-term consequences of mild TBI

can be developed Such studies will lay the groundwork for making sure people with

long-term problems resulting from mild TBI are identified and are provided the

services they need

bull Methods development

1 CDC should support research to develop accurate methods for identifying people

with mild TBI This includes developing an improved case definition for identifying

people with mild TBI from administrative data sets including CDC-funded TBI

surveillance of TBIs treated in hospital emergency departments See the TBI Report

to Congress on Mild Traumatic Brain Injury in the United States

wwwcdcgovdocdoid0900f3ec8006b2e5) (Note Beginning September 2004

CDC funded two TBI surveillance states [South Carolina and New York] to conduct a

study to validate an improved ICD-9-CM code-based case definition to identify

people with mild TBI from administrative data sets

27

In a similar effort with CDC funding the Michigan Public Health Institute is currently

evaluating the level of agreement between two approaches to identifying non-

hospitalized cases of mild TBI treated in emergency departments using a surveillance

ICD-9-CM case definition vs using a prospective case identification protocol)


1 CDC should maintain current state-based surveillance of TBIs treated in hospital

emergency departments (ED) to track declines in TBI hospitalization rates and report

data on the portion of the population with mild TBI that is identified in emergency

department data sets These data sets also include important information about TBI

among children since approximately 10 times as many TBIs among children are seen

in emergency departments as are admitted to hospitals (Note ED data for TBI from

the National Hospital Ambulatory Care Survey [NHAMCS] were recently analyzed and

published in a CDC report [Langlois et al 2004] CDC has also funded a pilot study

to determine the feasibility of using injury data from the Consumer Product Safety

Commissionrsquos National Electronic Injury Surveillance System [NEISS] to identify TBIs

treated in the ED)

2 CDC should fund studies of the long-term outcomes of mild TBI among people

treated in emergency departments to document that for some people with mild

TBI the effects of the TBI are not mild

bull Education

1 CDC should conduct research to develop effective messages to educate healthcare

providers and the public that TBIs that are initially diagnosed as mild do not always

result in mild consequences Although most patients with concussions or mild TBIs

do appear to recover fully from their injuries some experience long-term memory

emotional or other problems that can adversely affect their potential to work and

perform daily activities

28

2 CDC state Brain Injury Associations and other organizations should work with

hospital associations and emergency medical and trauma systems to provide

information about mild TBI routinely with discharge orders (eg by storing

information and printing it along with discharge instructions to be given to

emergency department patients diagnosed with TBI)

29

Summary

By definition TBI surveillance and registries differ but many of the functions that registries

serve could be implemented by enhancing existing surveillance systems Leveraging existing

TBI and injury data collection efforts including TBI surveillance that is already ongoing in

states would result in greater efficiency and cost savings than developing a new

registry-type data collection system

30

References

Brooks CA Gabella B Hoffman R Sosin D Whiteneck G Traumatic brain injury designing

and implementing a population-based follow-up system Archives of Physical Medicine amp

Rehabilitation 199778S26ndash30

Feinstein AR Clinical Epidemiology The Architecture of Clinical Research Philadelphia WB

Saunders 1998

Foege WH Hogan RC Newton LH Surveillance projects for selected diseases International

Journal of Epidemiology 1976529ndash37

General Accounting Office Traumatic Brain Injury Programs Supporting Long-term Services

in Selected States Report GAOHEHS-98-55 Washington (DC) US General Accounting

Office Health Education and Human Services Division 1998

Langlois JA Kegler SR Butler JA Gotsch KE Johnson RL Reichard AA Webb KW Coronado

VG Selassie AW Thurman DJ Traumatic brain injury-related hospital discharges results from

a 14-state surveillance system 1997 MMWR Surveillance Summaries 200352(No SS-4)1ndash20

Langlois JA Rutland-Brown W Thomas KE Traumatic Brain Injury in the United States

Emergency Department Visits Hospitalizations and Deaths Atlanta (GA) Centers for

Disease Control and Prevention National Center for Injury Prevention and Control 2004

Leith KH Phillips L Sample PL Exploring the service needs and experiences of persons with

TBI and their families the South Carolina experience Brain Injury 2004181191-1208

MacKenzie EJ Steinwachs DM Shankar B Classifying trauma severity based on hospital disshy

charge diagnosis Medical Care 198927(4)412ndash422

Marr A Coronado V editors Central Nervous System Injury Surveillance Annual Data

Submission Standards for the Year 2002 Atlanta US Department of Health and Human

Services CDC National Center for Injury Prevention and Control 2004

31

National Center for Injury Prevention and Control Report and Recommendations from the

Traumatic Brain Injury in Public Health Meeting Atlanta US Department of Health and

Human Services CDC National Center for Injury Prevention and Control 1999a

National Center for Injury Prevention and Control Traumatic Brain Injury in the United States

A Report to Congress Atlanta US Department of Health and Human Services CDC

National Center for Injury Prevention and Control 1999b

National Institutes of Health Consequences of traumatic brain injury In NIH Report of

the Consensus Development Conference on the Rehabilitation of Persons with Traumatic

Brain Injury Bethesda (MD) US Department of Health and Human Services NIH

1999 p 169ndash202

Pickelsimer E Gu J Gravelle W Selassie A Langlois J Population-based follow-up of

persons with traumatic brain injury the South Carolina Traumatic Brain Injury Follow-up

System Brain Injury Source 2002618ndash20

Sample PL Johns N Gabella B Langlois J Can traumatic brain injury surveillance systems

be used to link individuals with TBI to services Brain Injury 2004181177-1189

State and Territorial Injury Prevention Directorsrsquo Association Safe States 2003 Edition

Atlanta State and Territorial Injury Prevention Directorsrsquo Association 2003

Stuart M Fighting the silent epidemic The Florida Brain and Spinal Cord Injury Program

Journal of Head Trauma Rehabilitation 200419329-340

Thurman DJ Alverson C Dunn KA Guerrero J Sniezek JE Traumatic brain injury in

the United States a public health perspective Journal of Head Trauma Rehabilitation

199914602ndash15

32

Appendix 1

Additional Resources Articles and Book Chapters about Surveillance and Registries

Harrison C Dijkers M Traumatic brain injury registries in the United States an overview

Brain Injury 19926203ndash12

Parrish RG II McDonnel S Sources of health-related information In Teutsch S Churchill RE

editors Principles and Practice of Public Health Surveillance New York Oxford University

Press 2000 p 30ndash75

Solomon D Henry R Hogan J Van Amburg G Taylor J Evaluation and implementation of

public health registries Public Health Reports 1991106142ndash50

Wedell J Registers and registries a review International Journal of Epidemiology

19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries

Florida Brain and Spinal Cord Injury Program (BSCIP)

wwwdohstateflusWorkforceBrainSC

SC Traumatic Brain Injury Follow-up Registry

sctbifrmuscedu

Virginia TBI Registry

wwwbiavnetcentral_registryhtm

Defense and Veterans Brain Injury Center (DVBIC)

wwwdvbicorg

CDC TBI and State Injury Programs and Projects

TBI Data Systems

wwwcdcgovncipcprofilestbi

Core State Injury Program

wwwcdcgovncipcprofilescore_state

Injury Indicators

wwwcdcgovncipcpub-resindicators

34

CDCrsquos National Program of Cancer Registries

wwwcdcgovcancernpcr

TBI Legislation Authorizing CDCrsquos TBI Activities

PL 104-166 The Traumatic Brain Injury Act of 1996

httpthomaslocgovbssd104d104lawshtml Select the range 104-151 to 104-200

and click search Scroll down to 166 Select text or pdf

HR 4365 The Childrenrsquos Health Act of 2000

httpthomaslocgovcgi-binbdqueryzd106HR04365 Select text or pdf

35

Appendix 3

Other Websites

American College of Surgeons

wwwfacsorgaboutcorpprohtml

Barell Injury Matrix

wwwcdcgovnchsaboutotheracticebarellmatrixhtm

Brain Injury Association of America

wwwbiausaorg

Health Resources and Services Administration Emergency Medical Services for Children Program

wwwaskhrsagovorgdetailcfmid=252

Health Resources and Services Administration TBI Grant Program

wwwtbitacorg

International Classification of Diseases Health and Disability

www3whointicficftemplate

National Association of State Head Injury Administrators (NASHIA)

Guide to State Government Brain Injury Polices Funding and Services

Chapter on Data Collection (p 38ndash47)

wwwnashiaorgpdocfilesRCreguidehtm

National Center for Medical Rehabilitation Research TBI Clinical Trials Network

wwwtbi-ctorg

36

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 FRA 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This report is a publication of the National Center for Injury

Prevention and Control Centers for Disease Control and Prevention


Julie Louise Gerberding MD MPH

Director


Ileana Arias PhD

Acting Director

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

Editors







Acknowledgements












Group Participants




Bethesda Maryland




Tallahassee Florida










Bethesda Maryland






Table of Contents

Executive Summary1

Background 3


Background 7





Recommendations

General 18


Summary 30

References 31

Appendices




Executive Summary
























TBI registries

1










2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Editors







Acknowledgements












Group Participants




Bethesda Maryland




Tallahassee Florida










Bethesda Maryland






Table of Contents

Executive Summary1

Background 3


Background 7





Recommendations

General 18


Summary 30

References 31

Appendices




Executive Summary
























TBI registries

1










2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36







Group Participants




Bethesda Maryland




Tallahassee Florida










Bethesda Maryland






Table of Contents

Executive Summary1

Background 3


Background 7





Recommendations

General 18


Summary 30

References 31

Appendices




Executive Summary
























TBI registries

1










2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Group Participants




Bethesda Maryland




Tallahassee Florida










Bethesda Maryland






Table of Contents

Executive Summary1

Background 3


Background 7





Recommendations

General 18


Summary 30

References 31

Appendices




Executive Summary
























TBI registries

1










2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36







Table of Contents

Executive Summary1

Background 3


Background 7





Recommendations

General 18


Summary 30

References 31

Appendices




Executive Summary
























TBI registries

1










2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Table of Contents

Executive Summary1

Background 3


Background 7





Recommendations

General 18


Summary 30

References 31

Appendices




Executive Summary
























TBI registries

1










2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Executive Summary
























TBI registries

1










2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36











2

Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Background



























3






















4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36























4
















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36

















5

























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


























6



Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36




Background

















What Is a Registry

General Definition







7











sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36












sometimes collected

bull Identification

















8

















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


















bull Funding




9



States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36




States























10







Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36








Military










11
























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36

























12

Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Other Data Systems




TBI Surveillance























13












Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36













Timeliness deg




Flexibilitydeg










14



by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36




by private doctors









vehicle crash

bull Identification














15



























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36




























16






























17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36































17




General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36





General



1 To determine


















about TBI outcomes

18


Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36



Data Collection

bull State level
















and experts tondash





19











bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36












bull National level








20











of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36












of the data








should include

21




Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36





Grant Program










bull Children










22
















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36

















among children

bull Adults






23












24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36













24

bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


bull Data linkage














25





























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36






























26






Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36







Mild TBI

bull Taxonomy











services they need











27
















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36

















treated in the ED)




bull Education







28






29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36







29

Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Summary






30

References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


References





Saunders 1998



















31










1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36











1999 p 169ndash202












199914602ndash15

32

Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Appendix 1










19732221ndash28

33

Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Appendix 2

Websites by Topic

TBI Registries




sctbifrmuscedu




wwwdvbicorg


TBI Data Systems




Injury Indicators


34


wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36



wwwcdcgovcancernpcr







35

Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Appendix 3

Other Websites






wwwbiausaorg




wwwtbitacorg








wwwtbi-ctorg

36


Documents

Traumatic Brain Injury in the United States: The … Brain Injury in the United States: The Future of Registries and Data Systems This report is a publication of the National Center