State-Based Monitoring for Selected Hemoglobinopathies

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Many people in the United States who have a hemoglobinopathy (HEE-muh-glow-bin-OP-ath-ee) are aware that they have the condition.  This is because routine testing of all newborns for some of the hemoglobinopathies is performed by the state-based newborn screening (NBS) programs. Although screening for sickle cell disease (SCD), one of the hemoglobinopathies, has been included as part of NBS in all 50 states since 2006, screening for other hemoglobinopathies, such as alpha- and beta-thalassemia (thal-uh-SEE-mee-uh), is currently performed in only a few states. In addition, many people at risk for a hemoglobinopathy who live in the United States were born either before NBS began in their state, or in a country without NBS.  For these reasons, the actual number of people in the United States with hemoglobinopathies, and the associated public health impact, are unknown.

There is no ongoing monitoring system for hemoglobinopathies in the United States. This lack of a monitoring system makes it difficult for researchers to:

  • Identify people with these conditions,
  • Monitor use of healthcare services and any resulting changes in health or quality of life, and
  • Understand the impact of these conditions on the healthcare system.

About this Study

The National Heart, Lung, and Blood Institute (NHLBI)/NIH and the Division of Blood Disorders (DBD) at the Centers for Disease Control and Prevention (CDC) joined forces to develop a state-based monitoring system for SCD and thalassemia. The system, named the Registry and Surveillance System for Hemoglobinopathies or RuSH, was designed to identify and gather information on all people living with a hemoglobinopathy diagnosis of sickle cell diseases or thalassemia in one of the participating states (California, Florida, Georgia, Michigan, North Carolina, Pennsylvania, and New York) during 2004-2008.

This article, published in the journal, Genetics in Medicine, describes the efforts of the participating states and Federal Agencies to design the project and the methods used to collect data for the system. We invite you to read the abstract here.

Main Findings from this Study

  • This study identified 31,144 people who were living in California between 2004-2008 with a hemoglobinopathy diagnosis; 39,633 in Florida; 20,815 in Georgia; 12,680 in Michigan; 34,853 in New York; and 8,696 in North Carolina.
  • State health department employees, healthcare providers, academic institutions, community organizations, patients, and families were all important contributors to the program, and they worked closely with each other throughout the entire process.
  • The knowledge gained from this project could serve as the basis for the development of a patient registry that could be used to collect information about people with a hemoglobinopathy over a period of years, which would increase understanding of the characteristics of the patient population, along with their use of healthcare services and their health outcomes.

Do You Know?


More Information

To learn more about sickle cell disease, please visit our sickle cell disease homepage.

To obtain free resources on sickle cell disease, please visit the free materials section of our website.

To learn more about thalassemia, please visit our thalassemia homepage.