Health care professionals are often the first and most trusted resources for information and answers about newborn screening. There are many different kinds of health care professionals who serve families in the pregnancy planning, pregnancy, and postpartum periods: obstetricians and gynecologists (OB/GYNs), nurses, childbirth educators, doulas, midwives, pediatricians, family physicians, and more. All can serve as resources for questions about newborn screening. This section provides up-to-date and relevant information on some of the most commonly asked issues surrounding newborn screening, so health care professionals can be prepared to answer questions from their patients and clients.
Frequently Asked Questions
Q: What happens to the dried blood spots after results have been reported?
A: Many labs often kept dried blood spots because of their value to the family, to quality control and to assurance monitoring. Although many labs keep the dried blood spots, each state has their own policy regarding residual blood spot storage and use. For more information on dried blood spots and to learn what your state’s policy is go to http://www.babysfirsttest.org/newborn-screening/what-happens-to-the-blood-sample.
Q: How do I obtain information for my patient about sickle cell trait for NCAA compliance?
A: Starting in the 2010-2011 academic year, the National Collegiate Athletic Association (NCAA) mandated that all new student-athletes must be tested for the sickle cell trait or, if they decline testing, sign a waiver so that their college or university cannot be held liable. To show testing results from an earlier test for sickle cell trait, some families may be able to look to newborn screening results. As of 2007, every state nationwide now screens newborns for sickle cell disease as a part of their newborn screening panel. Some started screening for sickle cell disease before 2007. To determine if your state screened for sickle cell disease prior to 2007, see our state page. If your office does not keep newborn screening results on file, you will need to contact the state-screening program. Each state follows a different protocol for release of sickle cell testing results depending on budget and result storage constraints.
Q: Whom can I reach out to if I have an out-of-range result reported to me?
A: A “positive” or “out-of-range” result indicates that the screen showed signs that the baby may be at a higher risk of having one of the conditions tested. This does not mean the baby definitely has the condition. To confirm, follow-up testing must be performed immediately due to the serious nature of the conditions. In this case, contact the state newborn screening program and they will give you directions about what to do next. It is important to follow these directions because the sooner a diagnosis is made, the sooner the baby can be treated. To learn more, go to http://www.babysfirsttest.org/newborn-screening/responding-to-results
Q: Who should I contact if I don’t receive any newborn screening result for my patient?
A: Your state’s department of health newborn screening program will have the information you need. For contact information of your state program go here.
For more resources, check out the rest of this section:
- Prenatal Health Care Providers- Information tailored for prenatal providers on topics such as how to talk to expectant parents about newborn screening and what common questions parents have prior to screening
- Pediatric Health Care Providers- Links to ACMG ACTion sheets for conditions included in newborn screening, confirmatory testing algorithms for positive screening results, and a checklist of basics to cover with parents whose baby has received a positive screening result
- Dried Blood Spot Storage and Use- A review of common questions asked about dried blood spot storage and usage as well as links to state-specific information