Iowa Newborn Screening Program Experience with Hemoglobinopathy Screening over the Last Two Decades and Its Increasing Global Relevance

Abstract

Hemoglobinopathies are the commonest monogenic disorder worldwide, with approximately seven percent of the world population being carriers of hemoglobinopathies. The healthcare utilization impact of thalassemia has resulted in global public health initiatives to screen for hemoglobinopathies, especially sickle cell disease (SCD). The Iowa Newborn Screening Program (INSP) has been in place for more than 50 years with a primary focus on detecting SCD. Recent changes in migration patterns have led to a global distribution of hemoglobinopathies in the western world, which has translated to an increase in the diagnosis of SCD and the incidental detection of non-sickling hemoglobinopathies within the INSP. This study documents the birth prevalence of hemoglobinopathies diagnosed in newborns through the INSP and highlights the need for newborn screening programs to evolve to meet the healthcare needs of underserved, minority populations.

Current Status of Newborn Bloodspot Screening Worldwide 2024: A Comprehensive Review of Recent Activities (2020–2023)

“…In a letter to the public, the first fee increase for NBS since 2014 was introduced (USD 122 to USD 162) covering increased testing and courier services, among others [ 234 ]. A recent review of HGB screening data in Iowa documented the birth prevalence of hemoglobinopathies in Iowa and highlighted the need for periodic outcome evaluation to ensure that the healthcare needs of underserved, minority populations are met [ 235 ]. A summary of SCD data for each state from 1 January 1991 through 31 December 2010 has also been published [ 236 ].…”