Sickle Cell Data Collection (SCDC) Publications
Health scientists study the information collected by the Sickle Cell Data Collection (SCDC) program. Then, they publish their findings in peer-reviewed articles, reports, and posters presented at sickle cell disease (SCD) related conferences. Scientists use this information to improve SCD education, treatment, and policy. Bookmark this page for quick access to references of all publications developed by the SCDC program.
Peer-reviewed articles
2019
- Snyder AB, Zhou M, Theodore R, Quarmyne MO, Eckman J, Lane PA. Improving an Administrative Case Definition for Longitudinal Surveillance of Sickle Cell Disease. Public Health Rep. 2019 May/Jun;134(3):274-281. doi: 10.1177/0033354919839072.
2017
- Hulihan M, Hassell KL, Raphael JL, Smith-Whitley K, Thorpe P. CDC Grand Rounds: Improving the Lives of Persons with Sickle Cell Disease. MMWR Morb Mortal Wkly Rep. 2017; 66:1269–1271.
- Paulukonis ST, Feuchtbaum LB, Coates TD, Neumayr LD, Treadwell MJ, Vichinsky EP, Hulihan MM. Emergency department utilization by Californians with sickle cell disease, 2005–2014. Pediatr Blood Cancer. 2017 Jun; 64(6).
- Snyder AB, Lane PA, Zhou M, Paulukonis ST, Hulihan MM. The accuracy of hospital ICD-9-CM codes for determining sickle cell disease genotype. J Rare Dis Res Treat. 2017; 2(4):39–45.
2016
- Paulukonis ST, Eckman JR, Snyder AB, Hagar W, Feuchtbaum LB, Zhou M, Grant AM, Hulihan MM. Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 through 2008. Public Health Rep. 2016 Mar-Apr; 131(2):367–75.
Reports
- SCDC Report: Georgia
- SCDC Report: California [922 KB / 28 pages]
- SCDC Program Report: Data To Action
Abstracts/Posters
California
- County-level surveillance of sickle cell disease population, healthcare utilization, and fragmentation to support improvements in access to care [708 KB / 1 page]
- Developing a data-driven sickle cell disease public health surveillance agenda in California [134 KB / 2 pages]
- Emergency department utilization by Californians with sickle cell disease, 2005-2014 [140 KB / 3 pages]
- Maternal deaths among California women with sickle cell disease 2004-2014 [41.7 KB / 1 page]
- Mortality among California’s Sickle Cell Data Collection cohort, 2005-2014 [218 KB / 1 page]
- Pregnancy outcomes for California women with sickle cell disease [241 KB / 1 page]
Georgia
- Accuracy of ICD-9 coding for sickle cell disease (SCD) in children and adolescents
- Using multiple data sets to build a surveillance system for hemoglobinopathies: early lessons from Georgia
Additional Resources
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