Spinal muscular atrophy (SMA) was added to the U.S. Recommended Uniform Screening Panel (RUSP) in 2018. This study, published in the International Journal of Neonatal Screening, examined the 34 fully implemented spinal muscular atrophy (SMA) newborn screening (NBS) programs in the U.S. and several programs on the path to implementation as of June 2021.
Data were gathered on the current 34 state NBS programs and 7 programs in the process of implementation despite challenges and delays due to the COVID-19 pandemic. The data included the number of states utilizing specific SMA screening methodologies. While collecting data on the different phases of implementation states need to move through to fully screen newborns for SMA, the researchers also analyzed the laboratory and follow-up program considerations NBS programs must make.
Ultimately, the researchers identified that within 2 years of SMA being added to the RUSP, approximately 82% of the 34 states implemented SMA screening for their entire population. SMA screening was found to be fully implemented in 5 states. Lastly, obtaining approval from the state budget authority was found to be the most time-intensive activity of the SMA screening implementation process, and required an average of 10 months to complete.
In conclusion, the researchers recommend that states preparing to screen newborns for SMA need to reflect on the capacity of their program and the testing needs involved. They also put forth steps that programs can follow when implementing an SMA NBS program during the pandemic .
Source: Hale, K., Ojodu, J., & Singh, S. (2021). Landscape of spinal muscular atrophy newborn screening in the United States: 2018–2021. International Journal of Neonatal Screening, 7(3), 33. https://doi.org/10.3390/ijns7030033