Landmark Study Shines A Light on the Need to Modernize the US Newborn Screening System

By Christine Harrison, SVP Corporate Affairs
January 05, 2022

Recent publications in JAMA Network Open, Expert Evaluation of Strategies to Modernize Newborn Screening in the United States call for urgent change to ensure the U.S. newborn screening (NBS) system can keep pace with therapeutic innovation. For the first time ever, these landmark publications codify major NBS barriers while presenting a suite of expert-validated proposals for modernization.

The solutions put forward in these publications were drawn from in-depth interviews with 40 experts in NBS policy, advocacy, and implementation. The recommendations categorized as the most feasible and effective included better data, increased alignment among states and federal agencies, expanded capacity for genetic technologies, and increased funding.

This new body of evidence is a critical foundation for change. As our system currently stands, it is not uncommon for 10 – 15 years to pass between the availability of an approved therapeutic intervention and comprehensive screening in all 50 states. This gap exists due to a variety of system complexities, capacity challenges and funding limitations that lead to entirely preventable morbidity and mortality in children who could have benefited from a timely diagnosis and medical guidance.

At Orchard, we believe that now is the time to address the challenges of the U.S. newborn screening system. Orchard is committed to supporting the advocacy community in ensuring progress is made toward modernization through the advancement of these expert-driven recommendations.

Together, we can ensure that all children can have access to NBS regardless of what state they live in.

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