A framework for evaluating long-term impact of newborn screening S Kalkman et al, EJHG, October 3, 2023

From the article: "Today, expansion of NBS is accompanied by even more uncertainty about the benefit-harm ratio than before. New pharmacotherapies and technological developments in metabolomics and genomics have led to a substantial expansion of the NBS panel in a relatively short period of time. These novel tests and treatment options have generally not been assessed in presymptomatic individuals and knowledge on long-term outcome of treatment is lacking. Periodic evaluation would thus create important opportunities for continuous quality improvement; if the benefit-harm ratio is unfavorable then there is a strong case for adjustments or even for removing a condition from the panel." https://phgkb.cdc.gov/PHGKB/phgHome.action?query=Newborn%20screening&action=search&Mysubmit=Search