Newborn Screening Links & Resources

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What you need to know

Advisory Committee

The Nebraska Newborn Screening Advisory Committee advises the Program on matters related to population screening of newborns for congenital and inherited infant- and childhood-onset diseases/disorders or conditions

The Committee membership is determined by the Department's Chief Medical Officer which is comprised of a minimum of 15 and maximum of 25 stakeholders and representatives from but not limited to the following areas:  Newborn and pediatric primary health care providers; medical and allied professionals from the sub-specialties associated with treatment for the disorders screened; clinical laboratorians; and consumers with technical, professional, or personal experience with newborn screening for congenital and inherited disorders, as well as representatives from other stakeholder organizations and agencies.

The Committee is responsible for reviewing the state of the art for newborn screening practices across the United States and recommending policy for appropriate adoption of newborn screening practices for the State of Nebraska. The Committee monitors quality assurance data for pre-analytic, analytic and post-analytic aspects of the newborn screening system; reviews evidence and makes recommendations on candidate conditions; and provides technical advice relevant to newborn screening practices and procedures. 

The Advisory Committee meets quarterly in January, April, July, and October. Dates for upcoming public meetings can be found on the public meeting calendar .

Relevant statutes and regulations 

Newborn Screening Statute - 71-519
Consent Statute - 71-551
CCHD Regulations/Statutes - Title 181 Chapter 10

Regulations Governing Screening of Infants for Inherited and Congenital Infant- and Childhood-Onset Diseases -  Title 181 Ch​apter 2

Links and resources

National resources

Babies First ​Test                       
American Academy of Pediatrics
Secretary's Advisory Committee on Heritable Diseases in Newborns & Children
March of Dimes
National Center for Education in Maternal and Child Health
National Newborn Screening & Global Resource Center
National Organization for Rare Disorders
New Steps
Genetic Home Reference
Save Babies Through Screening Foundation

Reports and publications

2018 Annual Report

May 2016 Newborn Screening Provider Newsletter