Did you know that many states track and monitor birth defects? It is one way for them to better understand birth defects in order to try and prevent them. Today, I welcome guest blogger Melissa Gambatese, MPH, Research Analyst in the Perinatal Data Center here at the March of Dimes. Melissa will introduce you to the world of birth defects surveillance systems. It may sound a bit high tech or like something from a spy movie, but it is really a way for states to monitor birth defects and to hopefully use the information to help combat them and help families.
Every 4 ½ minutes a baby is born with a birth defect in the US. Birth defects are generally referred to as abnormalities of structure, function or metabolism (body chemistry) present at birth that result in physical or mental disabilities, or death. While some birth defects are caused by genetic conditions passed from the baby’s parents, the causes of most birth defects remain unknown.
The March of Dimes is committed to improving the health of babies by preventing birth defects. One of the ways to prevent birth defects is to better understand which populations are at highest risk for birth defects. This information allows public health professionals, policymakers, and health care providers to implement targeted prevention strategies. It also helps to provide adequate services to people affected by them. States monitor groups of people at risk for birth defects by establishing a surveillance system.
What is a surveillance system?
A surveillance system is a tool used in public health to collect information on a countless number of diseases and conditions. It provides a structure for identifying cases according to a standard definition. It also provides a way to analyze and then communicate surveillance findings to stakeholders, such as health care providers, researchers, and policymakers.
Surveillance systems can be passive, meaning they rely on physicians and medical staff to report cases to the state surveillance team, or active, meaning the state surveillance team reviews vital records, hospital diagnoses, and other data sources to identify cases.
Why do states have birth defects surveillance systems?
States use these systems to monitor trends in birth defects prevalence, or the number of babies born with a birth defect out of all live births born each year. States also use surveillance data to further research on the causes and prevention of birth defects and to link affected families to needed services.
States report surveillance data to the National Birth Defects Prevention Network (NBDPN), an organization of clinical and public health professionals dedicated to maintaining a network of state birth defect surveillance programs. Each year, NBDPN publishes a report containing prevalence data from all states with a birth defects surveillance system.
Do all states have a surveillance system?
The majority of US states (37 states and Puerto Rico) have a type of birth defects surveillance system.
Where can you find your state’s birth defects data?
Prevalence estimates reported by NBDPN for select states and birth defects are now available on PeriStats, the March of Dimes’ free statistical website. It contains the latest maternal and infant health-related data for the US.
Are birth defects preventable?
There is still so much we need to learn about preventing birth defects, but there are things that a woman can do before and during pregnancy to increase her chances of having a healthy baby. For example, it is known that maternal smoking causes a range of serious birth defects including heart defects, missing/deformed limbs, clubfoot, gastrointestinal disorders, and facial disorders (such as cleft lip/palate).
March of Dimes grantees are pursuing a variety of approaches aimed at preventing and improving treatment for many birth defects. Read about our research here.