Birth Defects are Common, Costly, and Critical
Common: Nationally, 1 in 33 babies are born with a birth defect. In Massachusetts, approximately 1,300 birth defects cases are ascertained by the Birth Defects Monitoring Program each year.
Costly: The Massachusetts combined lifetime cost for babies born with 12 major structural birth defects was estimated at $141.8 million (2010 dollars). In the U.S. birth defects lead to $2.6 billion per year in hospital costs alone (2004 data).
Critical: Birth defects are a leading cause of childhood hospitalization, as well as infant and childhood mortality. Early identification of a child with a birth defect, along with early interventions, can improve the child’s quality of life and may save his or her life.
Through the Birth Defects Monitoring Program, the Massachusetts Center for Birth Defects Research and Prevention is responsible for the collection of information regarding all prenatally and postnatally diagnosed cases of birth defects in the state. In order to monitor defects, it is essential to know what types of birth defects are occurring, how often they are occurring, and where they are occurring. Through the surveillance program, the Massachusetts Department of Public Health is able to estimate the prevalence of birth defects, search for causative factors, address community concerns, provide information and referral to families, plan appropriate interventions and services, and measure the success of screening and prevention efforts.
Overview
Established in 1996, the Massachusetts Center for Birth Defects Research and Prevention is a collaboration between the Massachusetts Department of Public Health (DPH), Boston University's Slone Epidemiology Center (SEC), and Brigham and Women's Hospital Active Malformations Surveillance Program (BWH). The Center is supported by the Centers for Disease Control and Prevention as a Center for Excellence in Birth Defects Research.
Slone Epidemiology Center and Brigham and Women's Hospital bring to the Massachusetts Center more than 20 years of combined experience in birth defects research. The Massachusetts Center draws on the experience of and fosters communication among the region's strong network of clinicians and researchers. The Center's areas of expertise include:
- Surveillance and methodology
- Pediatric, reproductive, and social epidemiology
- Heart defects and drug teratogenicity research
- Experience conducting health service needs assessment
The MCBDRP is a member of the National Birth Defects Prevention Network and collaborates with other states in the National Birth Defects Prevention Study and the Birth Defects Study To Evaluate Pregnancy exposureS. These national studies are the largest effort in the U.S. to collect risk factor information about birth defects.
Center Partners
- Slone Epidemiology Center at Boston University
- Brigham and Women's Hospital Active Malformations Surveillance Program
- Massachusetts chapters of the March of Dimes Birth Defects Foundation
- Bureau of Climate and Environmental Health, MA Department of Public Health
Milestones & history
| Early 1960's | A national epidemic of limb reduction defects associated with women's prenatal use of thalidomide drew attention to birth defects. |
|---|---|
| 1963 | Massachusetts passed legislation mandating hospitals to report birth defects to MDPH. |
| 1970 | A trend developed to transport acutely ill infants to non-birthing tertiary care facilities who did not report to MDPH. Birth defects were underreported. |
| 1984 | The High Risk Infant Identification System (HRIIS) was established. Obstetric nurses in birth hospitals captured data on birth defects. The program was phased out in the early 1990's. |
| 1990's | Birth defects data were collected from administrative review of birth, death, and fetal death certificates from the Registry of Vital Records and Statistics and Uniform Hospital Discharge Data. Birth defects were underreported because the documentation was inconsistent. |
| 1995 | The CDC sponsored a pilot study to analyze the administrative review data. This showed that birth defect reporting on birth certificates was underreported while it was reported more completely and accurately in hospital discharge data. |
| 1996 | The CDC awarded funding to MDPH to establish the Center for Birth Defects Research and Prevention in collaboration with Slone Epidemiology Center at Boston University and the Genetics and Teratology Department at Massachusetts General Hospital. |
| 1997 | An active surveillance program was initiated. Trained personnel validated reports of birth defects, actively seeking cases in hospitals, nurseries, and neonatal intensive care units. Data were collected in the eastern part of the state. |
| 1998 | By the end of this year, the Birth Defects Monitoring Program (BDMP) had begun collecting cases from the all birthing hospitals in the state and one major tertiary care hospital. |
| 2001 | First BDMP Surveillance Report produced containing state-wide data from the population-based, active BDMP. |
| 2002 | The Massachusetts legislature expanded case ascertainment up to 3 years of age and expanded reporting sources to include physicians, outpatient clinics and genetic services. |
| Presently | The BDMP collects data from 53 birthing hospitals, 1 tertiary care and 1 specialty hospital in Massachusetts. |
Accomplishments
- Established an active, population-based birth defects surveillance system for Massachusetts Surveillance
- Published annual surveillance reports Surveillance Reports
- Participated in the National Birth Defects Prevention Study since 1998 NBDPS
- Interviewed 70% of eligible cases and controls
- Collected and processed biologic samples from families affected by birth defects so that in the future researchers will be able to investigate genetic factors that may play a role in the development of birth defects NBDPS
- Provided financial support for local research and published 39 journal articles since 1996. See publications.