CDC’s Sickle Cell Disease Surveillance History
The Centers for Disease Control and Prevention (CDC) and participating states began sickle cell disease (SCD) surveillance (monitoring) in 2010. SCD surveillance involves collecting information on diagnoses, treatment, and healthcare access for people with SCD in the United States. CDC and participating states developed many educational materials based on this information.
CDC coordinated these efforts as part of the two projects outlined below. Both used similar data sources, but each had a different funding source and amount. These differences influenced the number of participating states.
|Registry and Surveillance System for Hemoglobinopathies (RuSH)||Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH)|
|Participating states||CA, FL, GA, MI, NY, NC, and PA||CA, GA, and MS|
|Funding source||Interagency agreement between National Institutes of Health, National Heart, Lung, and Blood Institute, and CDC’s Division of Blood Disorders||Various CDC funding sources|
|Funding amount||2 year project totals: $1,100,000 per state||2 year project totals: MS: $250,000 GA: $420,000 CA: $748,000|
|Purpose||To identify and collect data on people living with SCD or thalassemia in the participating states||CA and GA: To evaluate and validate data collected during RuSH and to share findings from the project MS: To identify and collect data on people living with SCD in the state|
|Years of data||2004—2008||2004—2008|
*See list of peer-reviewed articles below.
Published peer-reviewed articles
- Wang Y, Kennedy J, Caggana M, Zimmerman R, Thomas S, Berninger J, Harris K, Green NS, Oyeku S, Hulihan M, Grant AM, Grosse SD. Sickle cell disease incidence among newborns in New York State by maternal race/ethnicity and nativity. Genet Med. 2013 Mar;15(3):222–8.
- Paulukonis ST, Harris WT, Coates TD, Neumayr L, Treadwell M, Vichinsky E, Feuchtbaum LB. Population based surveillance in sickle cell disease: methods, findings and implications from the California registry and surveillance system in hemoglobinopathies project (RuSH). Pediatr Blood Cancer. 2014 Dec;61(12):2271–6.
- Hulihan MM, Feuchtbaum L, Jordan L, Kirby RS, Snyder A, Young W, Greene Y, Telfair J, Wang Y, Cramer W, Werner EM, Kenney K, Creary M, Grant AM. State-based surveillance for selected hemoglobinopathies. Genet Med. 2015 Feb;17(2):125–30.
- Wang Y, Liu G, Caggana M, Kennedy J, Zimmerman R, Oyeku SO, Werner EM, Grant AM, Green NS, Grosse SD. Mortality of New York children with sickle cell disease identified through newborn screening. Genet Med. 2015 Jun;17(6):452–9.
- Neunert CE, Gibson RW, Lane PA, Verma-Bhatnagar P, Barry V, Zhou M, Snyder A. Determining Adherence to Quality Indicators in Sickle Cell Anemia Using Multiple Data Sources. Am J Prev Med. 2016 Jul;51(1 Suppl1):S24–30.