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chapter
14
Secondary Records and Healthcare
Databases
Marcia Y. Sharp, EdD, RHIA
Learning Objectives
●● Distinguish between primary and secondary data and
between patient-identifiable and aggregate data
●● Identify the internal and external users of secondary data
●● Compare the facility-specific indexes commonly found
in hospitals
●● Describe the registries used in hospitals according to pur-
pose, methods of case definition and case finding, data
collection methods, reporting and follow up, and pertinent laws and regulations affecting registry operations
●● Define the terms pertinent to each type of secondary
record or database
●● Discuss agencies for approval and education and certi-
fication for cancer, immunization, trauma, birth defects,
diabetes, implant, transplant, and immunization registries
●● Distinguish among healthcare databases in terms of
purpose and content
●● Compare manual and automated methods of data
collection and vendor systems with facility-specific
systems
●● Assess data quality issues in secondary records
●● Recognize appropriate methods for ensuring data
security and the confidentiality of secondary records
●● Discuss some of the other issues related to the
collection and maintenance of secondary data such as
transparency, ownership, and deidentification
●● Identify the role of the health information management
professional in creating and maintaining secondary
records
Key Terms
Abbreviated Injury Scale (AIS)
Abstracting
Accession number
Accession registry
Activities of daily living (ADLs)
Agency for Healthcare Research and Quality (AHRQ)
Aggregate data
Autodialing system
Case definition
Case finding
Claim
Clinical trial
Collaborative Stage Data Set
Computer virus
Credentialing
Data confidentiality
Data dictionary
Data security
Database
Deidentification
Demographic information
Disease index
Disease registry
Edit
Encryption
Facility-based registry
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368
Chapter 14
Food and Drug Administration (FDA)
Health services research
Healthcare Cost and Utilization Project (HCUP)
Healthcare Integrity and Protection Data Bank
(HIPDB)
Histocompatibility
Incidence
Index
Injury Severity Score (ISS)
Interrater reliability
Master population/patient index (MPI)
Medical Literature, Analysis, and Retrieval System Online
(MEDLINE)
Medicare Provider Analysis and Review (MEDPAR)
National Center for Health Statistics (NCHS)
National Health Care Survey
National Practitioner Data Bank (NPDB)
National Vaccine Advisory Committee (NVAC)
Operation index
Patient-identifiable data
Physician index
Population-based registry
Primary data source
Protocol
Public health
Registry
Secondary data source
Staging system
Transparency
Traumatic injury
Unified Medical Language System (UMLS)
Vital statistics
As a rich source of data about an individual patient, the health
record fulfills the uses of patient care and reimbursement for
individual encounters. However, it is not easy to see trends in
a population of patients by looking at individual records. For
this purpose, data must be extracted from individual records
and entered into specialized databases that support analysis across individual records. These data may be used in a
facility-specific or population-based registry for research and
improvement in patient care. In addition, they may be reported
to the state and become part of state- and federal-level databases that are used to set health policy and improve healthcare.
The health information management (HIM) professional can play a variety of roles in managing secondary
records and databases. He or she plays a key role in helping to set up databases. This task includes determining the
content of the database or registry and ensuring compliance
with the laws, regulations, and accrediting standards that
affect the content and use of the registry or database. All
data elements included in the database or registry must be
defined in a data dictionary. In this role, the HIM professional may oversee the completeness and accuracy of the
data abstracted for inclusion in the database or registry.
This chapter explains the difference between primary and
secondary data sources and their uses. It also offers an indepth look at various types of secondary databases, including indexes and registries, and their functions. Finally, the
chapter discusses how secondary databases are processed
and maintained.
record and entered into registries and databases are considered a secondary data source.
Data also are categorized as either patient-identifiable
data or aggregate data. The health record consists entirely
of patient-identifiable data. In other words, every fact
recorded in the record relates to a particular patient identified
by name. Secondary data also may be patient identifiable. In
some instances, data are entered into a database, along with
information such as the patient’s name, and maintained in
an identifiable form. Registries are an example of patientidentifiable data on groups of patients.
More often, however, secondary data are considered
aggregate data. Aggregate data include data on groups of
people or patients without identifying any particular patient
individually. Examples of aggregate data are statistics on the
average length of stay (ALOS) for patients discharged within
a particular diagnosis-related group (DRG).
Primary versus Secondary Data
Sources and Databases
The health record is considered a primary data source
because it contains information about a patient that has been
documented by the professionals who provided care or services to that patient. Data taken from the primary health
Purposes and Users of Secondary
Data Sources
Secondary data sources consist of facility-specific indexes;
registries, either facility or population based; and other
healthcare databases. Healthcare organizations maintain
those indexes, registries, and databases that are relevant to
their specific operations. States as well as the federal government also maintain databases to assess the health and wellness of their populations.
Secondary data sources provide information that is not
easily available by looking at individual health records.
For example, if the HIM director doing a research study
wanted to find the health records of 25 patients who
had the principal diagnosis of myocardial infarction,
he or she would have to look at numerous individual
records to locate the number needed. This would be a
time-consuming and laborious project. With a diagnosis
index, the task would involve simply looking at the list of
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Secondary Records and Healthcare Databases
diagnoses in numerical order and selecting those with the
appropriate diagnosis code for myocardial infarction for
inclusion in the study.
Data extracted from health records and entered into
disease-oriented databases can, for example, help researchers
determine the effectiveness of alternate treatment methods.
They also can quickly demonstrate survival rates at different
stages of disease.
Internal users of secondary data are individuals located
within the healthcare facility. For example, internal users
include medical staff and administrative and management
staff. Secondary data enable these users to identify patterns
and trends that are helpful in patient care, long-range planning, budgeting, and benchmarking with other facilities.
External users of patient data are individuals and institutions outside the facility. Examples of external users are state
data banks and federal agencies. States have laws that mandate cases of patients with diseases such as tuberculosis and
AIDS be reported to the state department of health. Moreover, the federal government collects data from the states on
vital events such as births and deaths.
The secondary data provided to external users is generally aggregate data and not patient-identifiable data. Thus,
these data can be used as needed without risking breaches of
confidentiality.
Check Your Understanding 14.1
Instructions: Answer the following questions on a separate piece
of paper.
1. What is the difference between a primary data source and a
secondary data source?
2. What is the difference between patient-identifiable data and
aggregate data?
3. Why are secondary data sources developed?
4. What are the differences between internal users and external
users of secondary data sources?
Facility-Specific Indexes
The secondary data sources that have been in existence the
longest are the indexes that have been developed within
facilities to meet their individual needs. An index is simply
a report from a database that enables health records to be
located by diagnosis, procedure, or physician. Prior to extensive computerization in healthcare, these indexes were kept
on cards with handwritten data. They now are usually computerized reports available from data included in databases
routinely maintained in the healthcare facility. Most acutecare facilities maintain indexes described in the following
subsections.
369
Master Population/Patient Index
The master population/patient index (MPI), which is
sometimes called the master person index, contains patientidentifiable data such as name, address, date of birth, dates
of hospitalizations or encounters, name of attending physician, and health record number. Because health records are
filed numerically in most facilities, the MPI is an important
source of patient health record numbers. These numbers
enable the facility to quickly retrieve health information for
specific patients.
Hospitals with a unit numbering system also depend on
the MPI to determine whether a patient has been seen in the
facility before and, therefore, has an existing medical record
number. Having this information in the MPI avoids issuance
of duplicate record numbers. Most of the information in
the MPI is entered into the facility database at the time of the
admission, preadmission, or registration process.
Disease and Operation Indexes
In an acute care setting, the disease index is a listing in diagnosis code number order for patients discharged from the
facility during a particular time period. Each patient’s diagnoses are converted from a verbal description to a numerical
code, usually using a coding system such as the International
Classification of Diseases (ICD). In most cases, patient diagnosis codes are entered into the facility health information
system as part of the discharge processing of the patient health
record. The index always includes the patient’s health record
number as well as the diagnosis codes so that records can be
retrieved by diagnosis. Because each patient is listed with the
health record number, the disease index is considered patientidentifiable data. The disease index also may include other
information such as the attending physician’s name or the date
of discharge. In nonacute settings, the disease index might be
generated to reflect patients currently receiving services in the
facility.
The operation index is similar to the disease index except
that it is arranged in numerical order by the patient’s procedure code(s) using ICD or Current Procedural Terminology
(CPT) codes. The other information listed in the operation index is generally the same as that listed in the disease
index except that the surgeon may be listed in addition to, or
instead of, the attending physician.
In many cases, facilities no longer have an actual listing
for the diagnosis and operation indexes. Instead, they query
the health information system utilizing the ICD code for the
condition or operation needed.
Physician Index
The physician index is a listing of cases in order by physician name or physician identification number. It also
includes the patient’s health record number and may include
other information, such as date of discharge. The physician
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370
Chapter 14
index enables users to retrieve information about a particular physician, including the number of cases seen during a
particular time period. As with the disease and operation
indexes, facilities generally query the health information system (HIS) to obtain physician data.
Check Your Understanding 14.2
Instructions: Answer the following questions on a separate piece
of paper.
1. How do HIM departments use facility-specific indexes?
2. What is the purpose of the master population/patient index?
What types of information does it include?
3. What is the purpose of disease and operation indexes? What
types of information do they include?
4. What is the purpose of the physician index? What types of
information does it include?
Registries
Disease registries are collections of secondary data related
to patients with a specific diagnosis, condition, or procedure.
Registries are different from indexes in that they contain
more extensive data. Index reports can usually be produced
using data from the facility’s existing databases. Registries
often require more extensive data from the patient record.
Each registry must define the cases that are to be included
in it. This process is called case definition. In a trauma registry, for example, the case definition might be all patients
admitted with a diagnosis falling into ICD code numbers 800
through 959, the trauma diagnosis codes.
After the cases to be included have been determined
through the case definition process described earlier, the
next step in data acquisition is usually case finding. Case
finding includes the methods used to identify the patients
who have been seen and treated in the facility for the particular disease or condition of interest to the registry.
After cases have been identified, extensive information
is abstracted from the paper-based patient record into the
registry database or fed from other databases and entered
into the registry database.
The sole purpose of some registries is to collect data
from the patient health record and to make them available
to users. Other registries take further steps to enter additional information in the registry database, such as routine follow-up of patients at specified intervals. Follow-up
might include rate and duration of survival and quality-oflife issues over time.
Cancer Registries
Cancer registries have a long history in healthcare. According to the National Cancer Registrars Association (NCRA),
the first hospital registry was founded in 1926, at Yale-New
Haven Hospital. It has long been recognized that aggregate
clinical information is needed to improve the diagnosis and
treatment of cancer. Cancer registries were developed as an
organized method to collect these data. The registry may be
a facility-based registry (located within a facility such as a
hospital or clinic) or a population-based registry (gathering
information from more than one facility within a geographic
area such as a state or region).
The data from facility-based registries are used to provide
information for the improved understanding of cancer,
including its causes and methods of diagnosis and treatment.
The data collected also may provide comparisons in survival
rates and quality of life for patients with different treatments
and at different stages of cancer at the time of diagnosis.
In population-based registries, emphasis is on identifying
trends and changes in the incidence (new cases) of cancer
within the area covered by the registry.
The Cancer Registries Amendment Act of 1992 provided
funding for a national program of cancer registries with population-based registries in each state. According to the law,
these registries were mandated to collect data such as
●● Demographic information about each case of cancer
●● Information on the industrial or occupational history
of the individuals with the cancers (to the extent such
information is available from the same record)
●● Administrative information, including date of diagnosis and source of information
●● Pathological data characterizing the cancer, including site, stage of neoplasm, incidence, and type of
treatment
Case Definition and Case Finding in
the Cancer Registry
As defined previously, case definition is the process of
deciding what cases should be entered in the registry. In a
cancer registry, for example, all cancer cases except certain
skin cancers might meet the definition for the cases to be
included. Skin cancers such as basal cell carcinomas might
be excluded because they do not metastasize and do not
require the follow-up necessary for other cancers included
in the registry. Data on benign and borderline brain or central nervous system tumors also must be collected by the
National Program of Cancer Registries (CDC 2008a).
In the facility-based cancer registry, the first step is case
finding. One way to find cases is through the discharge
process in the HIM department. During the discharge procedure, coders or discharge analysts can easily identify
cases of patients with cancer for inclusion in the registry. Another case-finding method is to use the facilityspecific disease indexes or the health information system
to identify patients with diagnoses of cancer. Additional
methods may include reviews of pathology reports and
lists of patients receiving radiation therapy or other cancer
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Secondary Records and Healthcare Databases
treatments to determine cases that have not been found by
other methods.
Population-based registries usually depend on hospitals,
physician offices, radiation facilities, ambulatory surgery centers (ASCs), and pathology laboratories to identify and report
cases to the central registry. The population-based registry has
a responsibility to ensure that all cases of cancer in the target
area have been identified and reported to the central registry.
Data Collection for the Cancer Registry
Data collection methods vary between facility-based registries and population-based registries. When a case is first
entered in the registry, an accession number is assigned.
This number consists of the first digits of the year the
patient was first seen at the facility, with the remaining digits
assigned sequentially throughout the year. The first case in
2012, for example, might be 12-0001. The accession number may be assigned manually or by the automated cancer
database used by the organization. An accession registry of
all cases can be kept manually or provided as a report by the
database software. This listing of patients in accession number order provides a way to monitor that all cases have been
entered into the registry.
In a facility-based registry, data are initially obtained
by reviewing and collecting them from the patient’s health
record. In addition to demographic information (such as
name, health record number, address), patient data in a cancer registry include
●● Type and site of the cancer
●● Diagnostic methodologies
●● Treatment methodologies
●● Stage at the time of diagnosis
The stage provides information on the size and extent of
spread of the tumor throughout the body. Historically, several different staging systems have been used. The American
Joint Committee on Cancer (AJCC) has worked, through its
Collaborative Stage Task Force, with other organizations
with staging systems to develop a standardized data set, the
Collaborative Stage Data Set, which uses computer algorithms to describe how far a cancer has spread (AJCC 2008).
After the initial information is collected at the patient’s
first encounter, information in the registry is updated periodically through the follow-up process discussed in the following section.
Frequently, the population-based registry only collects
information when the patient is diagnosed. Sometimes, however, it receives follow-up information from its reporting
entities. These entities usually submit the information to the
central registry electronically.
Reporting and Follow-up for Cancer
Registry Data
Formal reporting of cancer registry data is done through an
annual report. The annual report includes aggregate data on
371
the number of cases in the past year by site and type of cancer. It also may include information on patients by gender,
age, and ethnic group. Often a particular site or type of cancer is featured with more in-depth data provided.
Other reports are provided as needed. Data from the cancer registry are frequently used in the quality assessment
process for a facility as well as in research. Data on survival
rates by site of cancer and methods of treatment, for example, would be helpful in researching the most effective treatment for a type of cancer.
Another activity of the cancer registry is patient followup. On an annual basis, the registry attempts to obtain information about each patient in the registry, including whether
he or she is still alive, status of the cancer, and treatment
received during the period. Various methods are used to
obtain this information. For a facility-based registry, the
facility’s patient health records may be checked for return
hospitalizations or visits for treatment. The patient’s physician also may be contacted to determine whether the patient
is still living and to obtain information about the cancer.
When patient status cannot be determined through these
methods, an attempt may be made to contact the patient
directly, using information in the registry such as address
and telephone number of the patient and other contacts. In
addition, contact information from the patient’s health record
may be used to request information from the patient’s relatives. Other methods used include reading newspaper obituaries for deaths and using the Internet to locate patients
through sites such as the Social Security Death Index and
online telephone books. The information obtained through
follow-up is important to allow the registry to develop statistics on survival rates for particular cancers and different
treatment methodologies.
Population-based registries do not always include followup information on the patients in their databases. They may,
however, receive the information from the reporting entities
such as hospitals, physician offices, and other organizations
providing follow-up care.
Standards and Approval Agencies
for Cancer Registries
Several organizations have developed standards or approval
processes for cancer programs. (See table 14.1.) The
American College of Surgeons (ACS) Commission on Cancer
has an approval process for cancer programs. One of the
Table 14.1. Standard-setting or approval agencies for
cancer registries
Agency
Type of Registry
American College of Surgeons (ACS)
Facility based
North American Association of
Central Cancer Registries (NAACCR)
Population based
Centers for Disease Control and
Prevention
Population based
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Chapter 14
requirements of this process is the existence of a cancer registry as part of the program. The ACS standards are published
in the Cancer Program Standards (ACS 2008a). When the
ACS surveys the cancer program, part of the survey process is
a review of cancer registry activities.
The North American Association of Central Cancer
Registries (NAACCR) has a certification program for state
population-based registries. Certification is based on the
quality of data collected and reported by the state registry.
The NAACCR has developed standards for data quality and
format and works with other cancer organizations to align
their various standards sets.
The Centers for Disease Control and Prevention (CDC)
also has national standards regarding completeness, timeliness, and quality of cancer registry data from state registries
through the National Program of Cancer Registries (NPCR).
The NPCR was developed as a result of the Cancer Registries
Amendment Act of 1992. The CDC collects data from the
NPCR state registries.
Data Collection for Trauma Registries
Education and Certification for
Cancer Registrars
The Abbreviated Injury Scale (AIS) reflects the nature
of the injury and the severity (threat to life) by body system.
It may be assigned manually by the registrar or generated
as part of the database from data entered by the registrar.
The Injury Severity Score (ISS) is an overall severity measurement calculated from the AIS scores for the three most
severe injuries of the patient (Trauma.org 2008).
Traditionally, cancer registrars have been trained through onthe-job training and professional workshops and seminars.
The NCRA has worked with colleges to develop formal educational programs for cancer registrars either through a certificate or an associate’s degree program. A cancer registrar
may become certified as a certified cancer registrar (CTR) by
passing an examination provided by the National Board for
Certification of Registrars (NBCR). Eligibility requirements
for the certification examination include a combination of
experience and education (NCRA 2008).
Trauma Registries
Trauma registries maintain databases on patients with
severe traumatic injuries. A traumatic injury is a wound
or another injury caused by an external physical force such
as an automobile accident, a shooting, a stabbing, or a fall.
Examples of such injuries would include fractures, burns,
and lacerations. Information collected by the trauma registry may be used for performance improvement and research
in the area of trauma care. Trauma registries are usually
facility based but may, in some cases, include data for a
region or state.
Case Definition and Case Finding
for Trauma Registries
The case definition for the trauma registry varies from registry to registry. To find cases with trauma diagnoses, the
trauma registrar may query the HIS system looking for cases
with codes in the trauma section of ICD. In addition, the registrar may look at deaths in services with frequent trauma
diagnoses such as trauma, neurosurgery, orthopedics, and
plastic surgery to find additional cases.
After the cases have been identified, information is
abstracted from the health records of the injured patients and
entered into the trauma registry database. The data elements
collected in the abstracting process vary from registry to registry but usually include
●● Demographic information on the patient
●● Information on the injury
●● Care the patient received before hospitalization (such
as care at another transferring hospital or care from
an emergency medical technician who provided care
at the scene of the accident or in transport from the
accident site to the hospital)
●● Status of the patient at the time of admission
●● Patient’s course in the hospital
●● ICD diagnosis and procedure codes
●● Abbreviated Injury Scale (AIS)
●● Injury Severity Score (ISS)
Reporting and Follow-up for
Trauma Registries
Reporting varies among trauma registries. An annual report
is often developed to show the activity of the trauma registry.
Other reports may be generated as part of the performance
improvement process, such as self-extubation (patients removing their own tubes) and delays in abdominal surgery or patient
complications. Some hospitals report data to the National
Trauma Data Bank, a large database of aggregate data on
trauma cases (ACS 2008b). An example of the use of such
population data is the number of head injuries from motorcycle
accidents in a state to encourage passage of a helmet law.
Trauma registries may or may not do follow-up of the
patients entered in the registry. When follow-up is done,
emphasis is frequently on the patient’s quality of life after a
period of time. Unlike cancer, where physician follow-up is
crucial to detect recurrence, many traumatic injuries do not
require continued patient care over time. Thus, follow-up is
often not given the emphasis it receives in cancer registries.
Standards and Agencies for Approval
of Trauma Registries
The American College of Surgeons certifies levels I, II, III, and
IV trauma centers. As part of its certification requirements,
the ACS states that the level I trauma center, the type of center
receiving the most serious cases and providing the highest level
of trauma service, must have a trauma registry (ACS 2008b).
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Secondary Records and Healthcare Databases
Education and Certification of
Trauma Registrars
Trauma registrars may be registered health information technicians (RHITs), registered health information administrators (RHIAs), registered nurses (RNs), licensed practical
nurses (LPNs), emergency medical technicians (EMTs), or
other health professionals. Training for trauma registrars is
accomplished through workshops and on-the-job training.
The American Trauma Society (ATS), for example, provides
core and advanced workshops for trauma registrars. It also
provides a certification examination for trauma registrars
through its Registrar Certification Board. Certified trauma
registrars have earned the certified specialist in trauma registry (CSTR) credential.
Birth Defects Registries
Birth defects registries collect information on newborns with
birth defects. Often population based, these registries serve a
variety of purposes. For example, they provide information
on the incidence of birth defects to study causes and prevention of birth defects, to monitor trends in birth defects to
improve medical care for children with birth defects, and to
target interventions for preventable birth defects such as folic
acid to prevent neural tube defects.
In some cases, registries have been developed after
specific events have put a spotlight on birth defects. After
the initial Persian Gulf War, for example, some feared an
increased incidence of birth defects among the children
of Gulf War veterans. The Department of Defense subsequently started a birth defects registry to collect data on
