In order to monitor birth defects, it is essential to know what types of birth defects are occurring, how often they are occurring, and where they are occurring. Therefore, 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 one; and the infant's mother has a permanent address in Massachusetts (at time of delivery).
The Massachusetts Center conducts an active surveillance system. Birthing hospitals and other pediatric care centers across the state submit to the Center monthly discharge lists with birth defect diagnoses. Nursery and neonatal intensive care personnel report cases of birth defects to the Center. Medical record abstractors are then sent out to each hospital to collect important demographic and diagnostic information from hospital records to make sure the reported defect meets our definition of a case and is named correctly. The cases are reviewed by a clinical geneticist. Surveillance data are entered and maintained in a confidential electronic database.
When all the information is complete for a calendar year, a report is written to describe the numbers of babies with each defect. The report examines many factors such as race, ethnicity, 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 are monitored by the state newborn screening program. The MCBDRP surveillance reports are distributed to the public and are available online.
In the winter of 2009, Massachusetts enacted regulations (105 CMR 302) related to the Massachusetts Birth Defects Monitoring Program. Among its provisions, the regulations expanded the reporting requirements for birth defects cases identified at or after birth; extended reporting to cases identified prenatally, and established an Advisory Committee. The Advisory Committee, comprised of patients, families, health care providers, researchers, and other interested parties meets three times a year. Notices of upcoming meetings, posted under the open meeting law on the Mass DPH website, can be found here.
This information is provided by the Center for Birth Defects Research and Prevention within the Department of Public Health.