Related Experiment Video
Updated: Jun 5, 2026
A Point-of-Care Method with Integrated Decision Support Tool to Estimate Anemia at Population Level
Published on: January 19, 2024
Weighing the evidence for newborn screening for Hemoglobin H disease
Alex R Kemper1, Alixandra A Knapp, Danielle R Metterville
1Duke Clinical Research Institute, Duke University, Durham, NC 27705, USA. alex.kemper@duke.edu
Objective:
To conduct a systematic review to assist the United States Secretary of Health and Human Services Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) to determine whether Hemoglobin H screening should be included among the core recommended conditions for newborn screening.
Study Design:
We identified 21 articles in MEDLINE from 1989 to March 2010 that provided evidence regarding screening, treatment, and outcomes associated with Hemoglobin H disease.
Results:
In California, newborn screening has identified 9 cases per 100 000 of deletional hemoglobin H disease and 0.6 cases per 100 000 of nondeletional hemoglobin H disease. Five cases of hemoglobin Bart's hydrops fetalis syndrome were also identified in over ten years of screening for Hemoglobin H disease. Although Hemoglobin H disease is associated with a wide range of morbidity, no studies were found that evaluated the benefits of early identification and treatment.
Conclusions:
The SACHDNC found the data insufficient to recommend that states adopt newborn screening for Hemoglobin H disease.
