Frequently Asked Questions

Frequently Asked Questions

Early Check is a research study to check babies soon after birth for rare but serious health conditions. The Early Check screening tests are free, and no appointments are needed. It’s up to parents to decide whether or not to sign up their babies. Early Check is for babies born in North Carolina and babies currently living in North Carolina or South Carolina. The babies must have received regular North Carolina newborn screening.

Regular newborn screening is a process that happens after a baby is born. Before you leave the hospital or birthing center, a doctor or nurse pricks your baby’s heel with a needle to collect a few drops of blood. Then they send the blood to the North Carolina State Laboratory of Public Health to test for 50 health conditions.

Early Check is not the same as regular North Carolina newborn screening. This table shows the differences.

 

Early Check

Regular newborn screening

Parents must give permission for their babies to be screened

Yes

No

There are treatments for babies with the health problems that can greatly improve their symptoms

Maybe*

Yes

Type of program

Research

Public Health

*There are no cures for these health problems but there are resources to help babies get the best start. Researchers are looking for better treatments.

While regular newborn screening is automatic for all babies in North Carolina, you will need to choose to take part in Early Check. If you choose not to enroll your baby in Early Check, your baby will still have regular newborn screening just like other babies in North Carolina.

 Read more about how Early Check works and North Carolina's standard newborn screening.

  • Knowledge is power. Participating in Early Check can help you know whether your baby has a rare health condition. In the rare case that your baby has a condition, the sooner you know, the better.
  • The process is free and painless. The extra tests don't require any extra blood to be drawn from your baby. They use blood that is already taken through a regular heel prick after birth. You can sign up without a doctor.
  • You can make a difference. Right now, there is no cure for the health conditions that Early Check tests for. By taking part in Early Check, you’ll help us find treatments for rare health conditions and improve the lives of babies everywhere.

No. There are no charges to you or your insurance plan for taking part in Early Check. The costs are covered by the study.

Also, Early Check will provide for free:

  • A second test for any baby with a screening test that’s not normal
  • Genetic counseling for parents when the second test confirms the diagnosis of a health condition
  • A review of the baby’s development
  • Help finding doctors and support services

Early Check does not pay for:

  • Any other tests, office visits, treatments, and other long-term care needs for the baby

Early Check will only use your baby’s blood sample if you agree. It is your choice. If you decide not to take part in Early Check, your baby will still have regular North Carolina newborn screening and follow up. Your baby’s doctor will still receive the results of regular newborn screening.

The Early Check screening tests are done from a small amount of blood that is taken from a baby’s heel as part of regular newborn screening shortly after birth in the hospital or birthing center. We use that same blood to do the Early Check screening. We don’t need any more blood.

Learn more about how Early Check works.

That’s it! There’s nothing else you need to do. The Early Check team has your information and will conduct the 2 extra tests using the blood sample drawn from your baby after birth. After the tests, Early Check will contact you with the results. Most parents get their baby’s Early Check results before the baby is 2 months old. Early Check looks for rare health conditions, so most parents get a normal test result for their baby.

Learn more about what happens after the test.

The North Carolina State Lab conducts tests on your baby’s blood sample as part of regular newborn screening. Once that testing is completed, the Early Check team will test the same blood at the same location. Your baby’s blood sample will be kept for 5 years in the screening computer database. If you have questions about the storage of your baby’s blood sample, call the North Carolina State Lab: 919-733-3937.

The Early Check team works hard to protect your information. We protect the privacy and security of parents’ and babies’ information by keeping it in a special area on a secure and private network that it is held to high security. It is never possible to guarantee that a system is completely secure, but we have many strong tools in place to protect your information.

Yes, you can change your mind and withdraw from Early Check at any time. But if the baby's Early Check screening test has already been done, we’ll still contact you if the screening test is not normal. If you would like to withdraw from Early Check, contact us immediately.

If you take part in Early Check, we might contact you to see if you’re interested in participating in future research studies.

What if you still have questions?

If you have questions before or after signing up to take part in Early Check, please email or call us:

Note: This website does not take the place of talking with your doctor. If you have questions or concerns about whether Early Check is right for you, talk to your doctor before signing up.