newborn screening
NewSTEPs Convenes Short Term Follow-Up Stakeholders Meeting
by Thalia Wood , MPH , specialist , NewSTEPs
While testing every newborn for possible adverse conditions at birth is vital , the interactions that take place with parents and caregivers right after test results are received are just as critical . From a newborn screening ( NBS ) perspective , “ short term follow-up ” is 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 and that the newborn has received a diagnosis and , if necessary , treatment . This work can be rewarding yet difficult for short term follow-up staff from state NBS programs who often must deliver potentially life-threatening news .
To support these staff members , APHL ’ s Newborn Screening Technical assistance and Evaluation Program ( NewSTEPs ), in partnership with the Colorado School of Public Health , convened a meeting in Orlando , FL on October 25 . Supported with funding from the Health Resources and Services Administration ( HRSA ) and the Cystic Fibrosis Foundation ( CFF ), this meeting fulfilled a long unmet need by allowing NBS follow-up programs to participate in an all-state follow-up focused meeting . A CFF Quality Improvement meeting followed on the morning of October 26 .
Participants from 40 states examined communications issues faced by NBS follow-up staff . Keynote speakers discussed good techniques and strategies for conveying NBS messages , and breakout sessions considered issues with false negative screening results , pros and cons of models of laboratory location and follow-up , and funding . NewSTEPs sponsors other activities to support short term follow-up staff . Bi-monthly webinars have examined follow-up for X-linked Adrenoleukodystrophy , Hemoglobinopathies ,
Congenital Adrenal Hyperplasia , Congenital Hypothyroidism and other conditions as well as issues with education , false negatives , universal screening and more . All webinars are recorded and archived on www . newsteps . org . In addition to the webinars , NewSTEPs also sponsors a Short Term Follow-Up mixer at the Newborn Screening and Genetics Symposium to allow state program staff to meet each other and share ideas .
NewSTEPs provides quality improvement initiatives for newborn screening systems , an innovative data repository , and technical and educational resources to state newborn screening programs . The program aims to improve outcomes for newborns by facilitating initiatives that advance the overall quality of the newborn screening system . NewSTEPs is funded through a cooperative agreement to APHL from the Genetic Services Branch of HRSA .
Newborn Screening Follow-Up program stakeholders gathering at one of the round tables for discussion on issues and concerns affecting their programs .
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@ APHL |
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DIGITAL EXTRA : Visit the NewSTEPs website for more shortterm follow up resources ! |
Fall 2016 LAB MATTERS 25 |