Early Check is not yet available and program planning is still under development. Currently, the Early Check model focuses on five steps:
Step 1. Reaching out
We will create educational materials and make them available to parents before their baby is born. When the baby is born, we will give parents information to help them decide whether signing up for Early Check is right for them and their family.
Step 2. Signing up
Parents will choose whether or not to give permission to screen for spinal muscular atrophy and fragile X syndrome by signing up to participate in Early Check up to 2 months after their baby is born.
Step 3. Screening
The North Carolina State Laboratory of Public Health will run the tests for additional conditions offered by Early Check. The lab will use the same blood samples for these tests that were already collected for regular newborn screening. The lab will only perform these additional tests if parents give their permission by signing up for Early Check.
Step 4. Reporting results
Almost all of the babies tested for spinal muscular atrophy and fragile X syndrome in Early Check will not have those conditions. Parents of babies who do not have the conditions will receive a letter telling them the results and requesting permission for us to contact them in the future about medical research studies. However, if screening determines that a baby has one of these conditions, a member of the Early Check team will contact the family to schedule additional testing to confirm the findings.
Step 5. Following up
Our team will support the family medically and psychologically, and will tailor these services to family preferences as much as possible. We will invite parents to enroll in a research registry and give them information about ongoing medical research studies.
Our approach to working with families will be grounded in overarching principles of showing respect for parents and babies, earning trust, complying with regulations, and being sustainable. We believe it is very important to help families make choices that are right for them at every stage of the program.