Required Newborn Screening
What is known about the disorders that are included in REQUIRED NEWBORN SCREENING?
We know that the disorders included in REQUIRED NEWBORN SCREENING are thought to be treatable.
For some of these disorders, there is a good deal of information about the outcomes of babies who have the disorders. This may be because there are many babies with the disorder, or may be because the screening has been in place for many years, or both.
For other disorders, there is enough information to know that babies with the disorder will do better if they are found and treated early, but we do not yet have full information to know what to predict for their future. This may be because there are very few babies with the disorder, or because the screening is new, or because there is a new treatment.
In order to ensure that we can provide the best information for care and for decision-making, the Newborn Screening Program collects information about how the patients with these disorders are doing.
The kinds of information collected depend on the disorder, and includes information about whether the patients are alive and well, and whether they see a specialist regularly. Other information collected helps the Newborn Screening Program to provide knowledge about the disorder to babies’ health care providers and to families.