About Us

NJ Birth Defects History and Purpose

The Registry is a comprehensive, confidential database that provides data that can be used for epidemiological and statistical purposes for children with specific birth defects.  New Jersey legislation, NJSA 26:8-40.2 mandates reporting to the Registry all children diagnosed with a birth defect from birth through five years of age.  The Registry was upgraded from paper to a state of the art electronic system in 2009, allowing the entities mandated to report conditions an improved and expedited process of registering and referring infants and children.

Once a child is registered, a copy of the registration is sent to the Special Child Health Services Case Management Unit in the child’s county of residence to promote access to preventive and primary care for Children and Youth with Special Health Care Needs (CYSHCN).

Health entities required by N.J.A.C. 8:20 to report to the Registry include:

  • Health Care Facilities
    • General Hospitals
    • Special Hospitals
    • Birthing Centers
    • Federally Qualified Health Care Facilities
    • Pediatric Long-Term Care Facilities
  • Physicians 
  • Physician Assistants
  • Advanced practice Nurses
  • Audiologists
  • Certified Nurse Midwives
  • Dentists
  • Genetic Counselors
  • County and State Medical Examiners

As New Jersey is a passive registry, the entities are required to submit the registrations to the Registry using either the electronic system or a paper registration.

The Registry provides data to various supporting partners and groups including:

The Registry also works in collaboration with advocacy and health-related organizations such as the Statewide Parent Advocacy Network (SPAN), March of Dimes (MOD), and the Centers for Disease Control and Prevention (CDC) in advocating birth defects prevention and monitors activities related to birth defects.

Last Reviewed: 5/12/2022