Variability in Notification of Positive Newborn Screening Results for Sickle Cell Trait Across the United States
Author Information
Author(s): Scott Jayla Lynn, Christian Jana, Plazas Montana Manuela, Miller Yvette M., Naik Rakhi P.
Primary Institution: Johns Hopkins University
Hypothesis
There is significant variability in the notification practices of positive SCT results across NBS programs in the US.
Conclusion
The study found wide variability in NBS practices for SCT notification and highlighted the need for national guidelines to standardize these practices.
Supporting Evidence
- 100% of NBS programs provide notification of SCT status to either a pediatrician or parent.
- 98% of NBS programs retain electronic records of SCT status.
- Only one state provides renotification at reproductive age.
Takeaway
This study looked at how different states in the US tell parents if their baby has sickle cell trait, and it found that there are many different ways of doing this.
Methodology
An electronic survey was sent to NBS program personnel in all 50 states, the District of Columbia, and US territories, achieving a 100% response rate.
Potential Biases
Variability in the roles of NBS personnel completing the survey may introduce bias in the responses.
Limitations
The study relied on survey responses, which may limit the detail and nuance of the findings, and did not include non-governmental organizations involved in SCT education.
Participant Demographics
NBS program personnel from all 50 states, the District of Columbia, Guam, and Puerto Rico.
Digital Object Identifier (DOI)
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