Special Child Health Services Registry

The SCHS Registry is a confidential record of infants and children who have birth defects and special health care needs or who are at-risk for developing such needs. Infants and children with a birth defect diagnosed through five years of age are required to be reported to the Registry. A child with a mandated condition identified after 5 years of age through 21 may also be reported but is not mandated by law. While not mandated to be reported, infants and children through 21 years of age with any chronic medical condition, especially those associated with developmental delay, are included in the Registry.

Children may be registered by hospitals, physicians, dentists, audiologists, certified nurse midwives, advanced practice nurses, cytogenetic laboratories and directors of clinical laboratories. SCHS case management units and early intervention service providers may also register. Postmortem examinations resulting in the identification of a mandated condition need to be reported to the Registry.

About 10,000 registrations are received annually. The Registry serves as the primary link to case management services. Parents/guardians receive a letter and informational pamphlets from Registry staff. The pamphlets provide details on case management services, the Catastrophic Illness in Children Relief Fund, the SCHS program, or genetic services, as appropriate. In addition to early identification, the Registry also reviews the numbers of children with selected conditions and participates in research projects and other public health activities.

• The Law: Registration - Vital Statistics 26:8-40.22 [pdf 15K]
  
  
• The Rules: Chapter 20, Birth Defects Registry [pdf 38K]
  
  
• SCHS Registration Form (SCH-0) [word 76k, pdf 87k]
  
  
• Facts about Jaundice & Kernicterus (English & Spanish):
  • Jaundice Alert: What Every Parent Needs to Know [pdf 128k]
  • Alerta Sobre La Ictericia (en espanol) [pdf 90k]
  • CDC’s Jaundice Brochure [pdf 1.14m]
  • Folleto sobre la Ictericia (en espanol) [pdf 1.7k]

National Center on Birth Defects and Developmental Disabilities at: www.cdc.gov/ncbddd

The Prevention of Neural Tube Defects with Folic Acid (English and Spanish versions) at:  www.cdc.gov/ncbddd/folicacid

What the CDC says about Preventing Birth Defects: Having a Healthy Pregnancy; Diabetes and Pregnancy ; Folic Acid Prevents some Birth Defects at: www.cdc.gov/ncbddd/bd/prevention.htm

Facts about jaundice/kernicterus for both parents and health care professionals: warning signs, treatments and prevention (English and Spanish versions) at: www.cdc.gov/ncbddd/dd/kernichome.htm

Spina Bifida Association, Spina Bifida Foundation, and the National Resource Center for Spina Bifida at:www.sbaa.org

Some Internet Sites with Information on Birth Defects Monitoring, Surveillance Systems, The Health and Environment Linked for Information Exchange (HELIX-ATLANTA) at: www.cdc.gov/ncbddd/bd/monitoring.htm

A network of birth defects programs and individuals working at local, state and national levels in birth defects surveillance, research and prevention at: www.nbdpn.org

Improving the health of babies by preventing birth defects, premature births, and infant mortality at: www.marchofdimes.com

Catastrophic Illness in Children Relief Fund Information from the New Jersey Department of Human Services at: www.state.nj.us/humanservices/CICRF1.html