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Req-822: Newborn Screening Follow-Up
Release Package: 2013 Format


At a Glance

Release Package:

2013 Format

Requirement ID:

Req-822

Title:

Newborn Screening Follow-Up

Description:

The goal of newborn screening is to identify a wide range of conditions that can potentially benefit from early detection during the presymptomatic or early symptomatic period. Historically, newborn screening has been based on dried blood spot analysis by state public health departments. More recently, point-of-service testing in the nursery (e.g., newborn hearing screening) has been included. Another point-of-service test that will likely be added in the coming year to newborn screening is pulse oximetry to detect critical cyanotic congenital heart disease. Newborn screening is expanding at a rapid rate. Although the US Secretary of Health and Human Services makes recommendations about what should be included as part of newborn screening, individual states are responsible for developing their own panel, including the threshold for a positive test. Some states require retesting of all newborns. States have varying methods of short and long-term follow-up for those that have tested positive. Some parents may choose to have supplemental newborn screening through private laboratories. This is outside of the scope of this requirement statement.

ONC and HRSA are actively developing use cases and other health IT resources around newborn screening. A use case is available at: http://www.hhs.gov/healthit/usecases/documents/NBSDetailedUseCase.pdf. The U.S. National Library of Medicine (NLM) has published the Newborn Screening Coding and Terminology to promote and facilitate the use of electronic health data standards for the conditions recommended for screening by the HHS Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). This is available at: http://newbornscreeningcodes.nlm.nih.gov/.

The National Newborn Screening and Genetics Resource Center (http://genes-r-us.uthscsa.edu/) provides continuously updated information on the conditions screened for in each state. In addition, links are available to each state program. The Resource Center also provides educational material for clinicians and family members.
Well-described clinical algorithms have been developed to guide general pediatricians and subspecialists in the process of newborn screening. These are available at: http://pediatrics.aappublications.org/content/121/1/192.abstract. The requirements were designed to support these algorithms. In addition, these requirements support the transition from diagnosis through screening to chronic condition management and long-term follow-up as described in Kemper AR, Boyle CA, Aceves J, et al. Long-term follow-up after diagnosis resulting from newborn screening: statement of the US Secretary of Health and Human Services' Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. Genet Med. 2008:10:259-261.

Related Requirements:

Relationship Release Package Requirement ID Requirement Title Requirement Type SHALL / SHOULD / MAY Compare Requirements
Req-822 Is Child Of 2013 Format Req-281 Documentation of Care, Measurements and Results Header Not Applicable Compare
Req-822 Is Parent Of 2013 Format Req-809 Report results of non-blood spot newborn screening tests Normative Statements SHALL Compare
Req-822 Is Parent Of 2013 Format Req-810 Provide ACT sheets to clinicians after out-of-range newborn screening result Normative Statements SHOULD Compare
Req-822 Is Parent Of 2013 Format Req-811 Record final diagnosis for abnormal newborn screening results Normative Statements SHALL Compare
Req-822 Is Parent Of 2013 Format Req-812 Record reporting of newborn screening results to the state health department Normative Statements SHALL Compare
Req-822 Is Parent Of 2013 Format Req-813 Record parental notification of newborn screening diagnosis Normative Statements SHALL Compare
Req-822 Is Parent Of 2013 Format Req-814 Provide educational material from health department for newborn screening conditions Normative Statements SHOULD Compare
Req-822 Is Parent Of 2013 Format Req-815 Record diagnoses on patient problem summary list Normative Statements SHOULD Compare

Topic Area(s):

Provenance:

SME

Achievability:

Requirement Type:

Header

Shall/Should/May:

Critical/Core:

No

Status:

Released

Links:

Clinical Algorithms: Well-described clinical algorithms have been developed to guide general pediatricians and subspecialists in the process of newborn screening. These are available at this link
http://pediatrics.aappublications.org/cgi/content/abstract/121/1/192

National Newborn Screening and Genetics Resource Center: The National Newborn Screening and Genetics Resource Center provides continuously updated information on the conditions screened for in each state. In addition, links are available to each state program. The Resource Center also provides educational material for clinicians and family members.
http://genes-r-us.uthscsa.edu/

Newborn Screening Coding and Terminology: The U.S. National Library of Medicine (NLM) has published the Newborn Screening Coding and Terminology to promote and facilitate the use of electronic health data standards for the conditions recommended for screening by the HHS Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). This is available at this link
http://newbornscreeningcodes.nlm.nih.gov/

Recommended Uniform Screening Panel: Recommended Uniform Screening Panel of the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children
http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/recommendedpanel/uniformscreeningpanel.pdf

Newborn Screening AHIC Use Case: Newborn Screening American Health Information Community (AHIC) Detailed Use Case
http://www.hhs.gov/healthit/usecases/documents/NBSDetailedUseCase.pdf

See Also:

Not Provided

Comments:

Not Provided

Additional Information:

ONC and HRSA newborn screening use cases: ONC and HRSA developed a detailed use case related to newborn screening, at http://www.hhs.gov/healthit/usecases/documents/NBSDetailedUseCase.pdf This is a Newborn Screening Use Case document developed by the Office of the National Coordinator for Health Information Technology (ONC to represent the AHIC priorities and provide context for the national agenda activities, beginning with the selection of harmonized standards by the Healthcare Information Technology Standards Panel (HITSP AHIC specifically requested that the Newborn Screening Use Case focus on the ability to order and communicate the results from screenings in various clinical domains. [Last accessed 27 September 2012]
Not Provided

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Last Updated 04/13/2016
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