Conditions Screened By State

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New Jersey

What conditions are screened for in New Jersey?


About Newborn Screening in New Jersey

Program Overview:

New Jersey law requires that every baby born in New Jersey be screened for 54 conditions that can cause serious health problems. These conditions may not be apparent at birth, but if left undetected and not treated early in life, can lead to problems that include intellectual disability, physical disability, or even death. This screening test includes a heel prick to collect a few drops of blood, which are then analyzed in a lab for a certain set of 54 genetic conditions.

Newborn screening is a comprehensive program that includes testing, follow-up of results, and if necessary, examination and treatment by a qualified specialist. Early detection and treatment of the disorders on the newborn screening panel can prevent life long disabilities, including developmental disabilities and life threatening infections.

How is Newborn Screening Paid for in ­­New Jersey?

Initial newborn screening collection forms are purchased by birthing hospitals and midwives at a cost of $90.00 per form. These forms are purchased in advance and the cost is incorporated into the labor and delivery charges.


Policies and Resources

Opt-Out

Newborns with one of these rare conditions often have no family history of the disorder and appear healthy at birth.  Because of this, the very best way to prevent permanent damage is to screen all newborns and begin treatment as early as possible.  All newborns are expected to receive a newborn screening test unless parents object on religious grounds. The person administering screening must inform parents of the purpose of the test and the need for screening, provide educational materials, and document refusal in the infant's medical record. It is the responsibility of the chief executive officer of a hospital or other birthing facility to ensure that parents are informed and supplied with educational materials provided by the state newborn screening follow-up program.

Support for families:  

One of the concerns some families may have when they find out their child has a condition detected through the newborn screening program is the increase in health care cost.  Fortunately, New Jersey has many laws and programs which have been put in place to make treatment of these conditions more affordable for families who are looking to provide the best care to their loved ones.

Also, New Jersey has made a commitment to assist families caring for children with complex, long-term medical and developmental disabilities. For these "special needs" children, prompt attention to their condition early in life helps assure they will lead healthier lives when they are older. Each of the State’s 21 counties has a Special Child Health Services (SCHS) Case Management Unit jointly funded by SCHS and the county freeholders.  SCHS Case Managers, with parental consent, work with the child’s parents and the physician to evaluate an affected child’s strengths and needs; and develops an individual service plan for the child and family.  Medical, educational, developmental, social and economic needs of the child and family are targeted.  Examples of programs that SCHS Case Managers may refer families to for family support include New Jersey Parent to Parent and the Catastrophic Illness in Children Relief Fund Program.  Click here to find your county’s case manager.

The Catastrophic Illness in Children Relief Fund (CICRF) is a unique State program that provides a financial safety net for New Jersey families overwhelmed by medical expenses that are not fully covered by insurance, State or federal programs, or any other resource.  Eligibility requirements include age (birth to 21 years), New Jersey residency, and the amount of uncovered medical expenses incurred must exceed 10% of the first $100,000 of a family’s annual income, plus 15% of any income over $100,000.  In the event that you are experiencing financial challenges for your child’s care, you can contact the CICRF program for more information by calling 1-800-335 FUND (3863), or visit the CICRF website.

The New Jersey Department of Health and Senior Services website has information on PKU services and treatment centers and sickle cell disease information and support.

Other Pediatric subspecialists who treat children identified through the New Jersey Newborn Screening Program can be found on these pages:
Pediatric endocrinology specialists
Pediatric hematology specialists
Pediatric metabolic genetic specialists
Pediatric pulmonology specialists

Storage and Use of Dried Blood Spots:

After your newborn has been screened for the conditions, there is some blood which remains on the card and this is called a “residual dried blood spot.” Currently, the New Jersey Department of Health and Senior Services securely stores all residual dried blood spots at ambient temperature and humidity for 23 years after testing. They are not used for purposes other than newborn screening without parental consent or court order.  This retention and use policy is undergoing significant revision as our State Newborn Screening Advisory Review Committee has gathered a group of medical experts, advocates, and parents to review the current policy.

Newborn screening information is confidential. Only non-identifiable information is public record.

To see a copy of the blood spot card used in New Jersey click here.

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