How the Center monitors birth defect data
To monitor birth defects, we must to know what types of birth defects are occurring, how often they are occurring, and where they are occurring. To gather this information, the MA Center for Birth Defects Research and Prevention maintains a registry of babies born with birth defects in Massachusetts. The Center staff collects information from:
- Birthing hospitals in Massachusetts
- Rhode Island birthing hospitals near the MA/RI border where MA residents go to give birth
- Hospital nurseries
- Tertiary care hospitals
- Vital records, including birth certificates, fetal death reports and infant death certificates
Currently, Massachusetts surveillance cases must meet the following criteria:
- The infant was live born, or the fetal remains were of a gestational age greater than or equal to 20 weeks or with a weight of at least 350 grams
- The infant or fetus had a structural birth defect that met diagnostic criteria
- The diagnosis was made before age 1, and the infant's mother has a permanent address in Massachusetts (at time of delivery).
Surveillance system structure
Gathering information across the state
Birthing hospitals and other pediatric care centers across the state submit monthly discharge lists with birth defect diagnoses to the Center. Nursery and neonatal intensive care personnel also report cases of birth defects.
Verifying the information
Then, Medical record abstractors go to each hospital to collect important demographic and diagnostic information from hospital records. The abstractors make sure the reported defect meets our definition of a case and is named correctly.
Reviewing the cases
A clinical geneticist reviews the cases.
Recording the data
Surveillance data are entered and maintained in a confidential electronic database.
Publishing annual reports
When all the information is complete for a calendar year, the Center writes a report to describe the numbers of babies with each defect. This report examines many factors, such as:
- Geographic region
- Type of defect
- Mother's age
- Single and multiple births
The primary focus of the Massachusetts surveillance system is identifying major structural birth defects. Selected genetic and chromosomal abnormalities are also included. Inborn errors of metabolism are not included, but the state newborn screening program monitors these errors. The MCBDRP surveillance reports are available to the public.
105 CMR 302 - Congenital Anomalies
In 2009, Massachusetts enacted regulations 105 CMR 302.000 - Congenital Anomalies related to the Massachusetts Birth Defects Monitoring Program (a recent revision was concluded in 2016). Among its provisions, the regulations:
- Detail the reporting requirements for birth defects cases identified at or after birth (up to 3 years)
- Include reporting of cases identified prenatally
- Establish an Advisory Committee
The Committee is comprised of patients, families, health care providers, researchers, and other interested parties and meets approximately twice a year
Additional Resources for
The brochures below describe 3 state programs that improve the health of babies and young children in Massachusetts: the New England Newborn Screening Program, the Universal Newborn Hearing Screening Program, and the Birth Defects Monitoring Program.