Short Term Follow Up

Please note that this page will be continually updated as resources are provided.

A critical component to the success of all newborn screening systems is ensuring that all infants receive appropriate testing and care. NewSTEPs partners with state newborn screening programs to provide a central location for Short Term Follow Up resources.

In the first of many upcoming activities, the NewSTEPs Short Term Follow Up workgroup is excited to announce bi-monthly webinars for the newborn screening community to share ideas and resources in the Short Term Follow Up arena. Announcements about each webinar will be made on the NewSTEPs listserv.

Definitions of Short Term Follow Up

Short Term Follow Up entails the process of ensuring that all newborns are screened, that an appropriate follow-up caregiver is informed of results, that confirmatory testing has been completed, that the newborn has received a diagnosis and, if necessary, treatment. SOURCE: Baby's First Test.

APHL's Newborn Screening and Genetics in Public Health program has developed a position statement on Newborn Screening Follow-up. APHL takes the position that tracking and follow-up of out-of-range newborn screening laboratory test results and invalid specimens are critical parts of the newborn screening program, and the screening program must work to include these activities in planning, financing, implementing, and evaluating pre-analytic, analytic and post-analytic newborn screening system activities.

Follow Up Strategies

Please email Erin.Darby@aphl.org if you have any resources pertaining to Follow Up Strategies that may be shared through this website. Examples of what we would like to offer through the NewSTEPs website are as follows:

  • Tools for effective and efficient initiatives to mitigate challenging follow-up.
  • Tools/methods used to locate infants.
  • Documents on closing out cases that cannot be located.
  • Special issues in non-traditional populations.
  • References

Disorder Specific Follow Up Resources

Cystic Fibrosis (CF)

  • The Cystic Fibrosis Foundation has developed tools for families with an infant with an abnormal newborn screen. The resource explains the fundamentals of CF newborn screening, what it means to be a carrier, and what is involved in sweat testing. The website can be found linked here.
  • The Clinical Laboratory Standards Institute (CLSI) has developed guidelines for cystic fibrosis newborn screening. The document was developed with international consensus and describes comprehensively the laboratory tests for detecting CF risk among newborns as well as recommendations for follow-up care. More information can be found linked here. Please note this is not a free resource.

Severe Combined Immunodeficiency (SCID)

  • The Newborn Screening Translational Research Network (NBSTRN) has compiled brochures from states regarding SCID screening and follow-up as well as other key resources for states implementing SCID newborn screening. These can be found linked here.
  • CLSI has developed guidelines for SCID: Newborn Blood Spot Screening for Severe Combined Immunodeficiency by Measurement of T-cell Receptor Excision Circles; Approved Guideline. This document addresses laboratory issues as well as short term follow-up for SCID and can be found linked here. Please note this is not a free resource.

NewSTEPs is seeking additional resources from the Newborn Screening community regarding Disease Specific Issues for Short Term Follow Up. Please email Erin.Darby@aphl.org to submit your resources.

Resources for Follow Up Staff

Please email Erin.Darby@aphl.org if you have any resources pertaining to Staffing that may be shared through this website. Examples of what we would like to offer through the NewSTEPs website are as follows:

  • Tasks assigned to Short Term Follow Up, including job descriptions and work duties.
  • Training resources for Short Term Follow Up personnel (links or documents).
  • Sample letters and communication resources developed by Newborn Screening Programs can be found linked here.

Reporting Strategies

Please email Erin.Darby@aphl.org if you have any resources pertaining to Reporting Strategies that may be shared through this website. Examples of what we would like to offer through the NewSTEPs website are as follows:

  • Protocol follow up for various screened disorders.
  • Policies or protocols for border babies.
  • Communication strategies between laboratory staff, follow up staff and specialists.
  • Policies on follow-up for after hours and weekends.

Outreach and Education

Please email Erin.Darby@aphl.org if you have any resources pertaining to Outreach and Education that may be shared through this website. Examples of what we would like to offer through the NewSTEPs website are as follows:

  • Policies and procedures for home birth populations.
  • Policies and procedures related to identifying carriers of a disorder via NBS.
  • Informing parents about NBS and parental consent for sharing of information.

Resources:

  • The Newborn Metabolic Division in the South Carolina Department of Health and Environmental Control has developed a manual for newborn screening that outlines the procedures of daily activities related to their program. They have also developed newborn screening information sheets for parents and providers. These resources can be found linked here.
  • A pamphlet with information on prenatal and newborn screening for parents, developed by Kay Kelly, a parent from Colorado and a member of the Baby's First Test 2013 Consumer Task Force can be found linked here, with additional information for parents featured on the Baby's First Test website. Additional resources pertaining to the Consumer Task Force can be found linked here.
  • The Alabama Department of Public Health has developed a series of brochures provided to families linked here and here.
  • The Maine Center for Disease Control and Prevention has developed a short term follow-up education sheet for parents, related to Severe Combined Immunodeficiency (SCID) outreach, linked here.
  • Please find pages faxed from the Emory Genetics Laboratory to providers for reporting and follow up regarding X-ALD and MCADD

Health Information Exchange

Please email Erin.Darby@aphl.org if you have any resources pertaining to Health Information Exchange that may be shared through this website. Examples of what we would like to offer through the NewSTEPs website are as follows:

  • Information on systems to integrate directly with the hospital or Primary Care Provider (PCP) offices to have the results places directly into the patient's medical record.
  • Methods to track short term follow-up electronically.