All newborns born in the USA are federally mandated to undergo a few different tests within the first 24-48 hours of birth. These include a blood test taken from the baby’s heel called dried blood spot (heel) test because the blood spots are collected on a special filter paper and then dried before sending the paper to the state appointed lab. This test checks for developmental, metabolic and genetic conditions. The other tests are a hearing test and one for congenital cardiac heart disease.
Since these tests are federally mandated, each state has to keep records of the tests conducted. If a baby is found to have a metabolic or genetic condition (about 10% of babies need further testing), follow up care is provided by the state to a certain extent.
Only a few states, however, have systems to keep track of all the tests for all the babies born in the state. In most states, each test is handled by a different system. Because there is no one system for all the information, these states find it very difficult to get data on percentage of babies born with a particular condition. If the baby gets adopted or their name changes, the state resources are stretched even further trying to find the baby data.
States need one system (One baby, One record) to store and retrieve all newborn screening records for each baby. This system needs to be connected to the birth hospital electronically so demographic data can be messaged over, thereby reducing costs and errors of re-entering the information. And the system needs to be connected to birth certificate records so that each state can be certain that every baby had the necessary tests and are being followed up as needed.