Data Sources Part 2
Birth Defects Registries
Birth defects registries aligned with the National Birth Defects Prevention Network (NBDPN) are statewide, population based surveillance systems that have identified birth defects in children born in each state. Birth defects registries may be used for ascertainment and classification of Tier 1 cases.
.
Strengths
May include the counts, incidence and prevalence of infants diagnosed with NAS as well as comorbidities. They can
include similar demographic information and some birthing parent/infant health characteristics that might be of use to
the NAS surveillance program.
Limitations
Case definitions vary and include ascertainment throughout the first year of life or beyond with an inherent data availability
delay.
Publicly Funded Health Care: Medicaid Claims Data
Medicaid is one of several publicly funded healthcare organizations serving state citizens. Medicaid is the state and federal partnership that provides health coverage for selected populations of low income and/or medical need. Medicaid claims data may be used for ascertainment and classification of Tier 2 cases.
.
Strengths
Includes demographic characteristics, diagnosis and procedure codes (ICD- 10-CM, CPT, HCPCS), therapies, all covered
services, prescriptions, costs, multiple sources of payment. Healthcare claims data, including pharmacy data can provide
crucial information relating to medications, prescribed treatments, charges, and physician visits not available from other
sources.
Limitations
Program coverage and funding of programs vary state by state. There may be a lag in data availability. Analysis can be
restricted to infants with a code indicating newborn hospitalization to prevent duplicate cases, but this will eliminate cases
identified after the delivery hospitalization.
All Payer Claims Data
All Payer Claims Data (APCD) is available in several states and includes both publicly and privately funded healthcare information on medically- related claims from emergency departments and in-patient, out-patient and skilled nursing facilities. All Payer Claims Data could be used for Tier 2 ascertainment and classification.
.
.
Strengths
Includes demographic characteristics, diagnosis, and procedure codes (ICD-10-CM, CPT, HCPCS), therapies, all covered
services, prescriptions, costs, sources of payment.
Limitations
Covered populations may vary by state depending on participation by federal and self-funded health care plans. There may
be a lag in data availability. Analysis can be restricted to infants with a code indicating newborn hospitalization to prevent
duplicate cases, but this will eliminate cases identified after the delivery hospitalization.
Private Insurers: Health Management Plan Data
Private insurers / managed care plans keep records of all of the claims they process. Data sharing agreements can potentially be established with these entities to gather specific information on treatment, medication, etc. Private insurer data could be used for Tier 2 ascertainment and classification.
.
Strengths
Medical record level data with more specific information on treatment, medication, and follow-up.
Limitations
Difficult / time consuming to obtain agreements with data owners. Population varies depending on the size of the
population served by each care organization. Some insurers may redact records containing information on substance use
disorders. There may be a lag in data availability. Analysis can be restricted to infants with a code indicating newborn
hospitalization to prevent duplicate cases, but this will eliminate cases identified after the delivery hospitalization.
Residential Pediatric Recovery Centers
Health care services provided to infants in residential pediatric recovery centers. Includes multiple diagnosis codes (ICD-10-CM), chief complaint and physician or triage notes for the neonate. May include administrative/discharge records. Residential pediatric recovery center data could be used to ascertain and classify Tier 1 cases.
.
Strengths
Residential treatment centers treat multiple conditions from drug and alcohol addictions and in some states can provide
concurrent care for the birthing parent.
Limitations
Program coverage, data acquisition and funding of programs vary state by state.
Prescription Drug Monitoring Programs (PDMP)
A PDMP is an electronic database that tracks controlled substance prescriptions within a state. Information may be available on substances prescribed during pregnancy if able to link PDMP data with case data.
.
Strengths
The PDMP data source is comprehensive for the state, and if it is possible to access and use it may provide information on
substance exposure during pregnancy as a part of case surveillance or for special studies. For more in-depth analyses, it is
possible to determine the time of the exposure by the date the prescription was filled as well as the amount/volume.
Limitations
There are strict regulations regarding access and use of data from PDMP. Linkage of data between cases and the PDMP
may not yield high results. These data contain information about prescriptions filled, but not necessarily consumed.
Vital Records
A state’s office of vital records is responsible for issuing birth and death certificates. Birth certificates will contain demographic information on the infant and parent(s) and limited health information about the infant at time of birth. An
office of vital records also provides aggregate data on births or deaths within a jurisdiction.
.
Strengths
Aggregate data from birth certificates can be used in the calculation of rates as part of surveillance. Neonatal abstinence
syndrome may be a diagnosis tracked on a birth certificate within some jurisdictions.
Limitations
All infants diagnosed with NAS may not receive an indication of that diagnosis on a birth certificate (if applicable in the
jurisdiction) due to timing differences between the issuance of a birth certificate and diagnosis.
Next, Variables for collection and analysis
