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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:
Currently, Massachusetts surveillance cases must meet the following criteria:
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.
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.
A clinical geneticist reviews the cases.
Surveillance data are entered and maintained in a confidential electronic database.
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:
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.
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:
The Committee is comprised of patients, families, health care providers, researchers, and other interested parties and meets approximately twice a year
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.