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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DIGITAL EXTRA: Visit the NewSTEPs website for more shortterm follow up resources! |
Fall 2016 LAB MATTERS 25 |