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

2020

• Aluc A, Zhou M, Paulukonis ST, Snyder AB, Wong D, Hulihan MM. Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005-2016external icon [published online ahead of print, 2020 Aug 12]. Pediatr Hematol Oncol. 2020;1-5. doi:10.1080/08880018.2020.1779886
• Johnston EE, Adesina OO, Alvarez E, Amato H, Paulukonis S, Nichols A, Chamberlain LJ, Bhatia S. Acute Care Utilization at End of Life in Sickle Cell Disease: Highlighting the Need for a Palliative Approachexternal icon. J Palliat Med. 2020 Jan;23(1):24-32.
• Kayle M, Valle J, Paulukonis S, Holl JL, Tanabe P, French DD, Garg R, Liem RI, Badawy SM, Treadwell MJ. Impact of Medicaid expansion on access and healthcare among individuals with sickle cell diseaseexternal icon. Pediatr Blood Cancer. 2020 May;67(5):e28152.

2019

• Snyder AB, Zhou M, Theodore R, Quarmyne MO, Eckman J, Lane PA. Improving an Administrative Case Definition for Longitudinal Surveillance of Sickle Cell Diseaseexternal icon. Public Health Rep. 2019 May/Jun;134(3):274-281. doi: 10.1177/0033354919839072.
• Tang A, Branscomb J, Zhou M, Snyder A, Eckman J. Characterizing complication risk from multisite, intermittent transfusions for the treatment of sickle cell diseaseexternal icon. Pediatr Blood Cancer. 2019 Oct;66(10):e27921.

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, 2005–2014external icon. 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 2008external icon. Public Health Rep. 2016 Mar-Apr; 131(2):367–75.

Reports

• SCDC Report: Georgiaexternal icon
• SCDC Report: California pdf icon[922 KB / 28 pages]
• SCDC Program Report: Data To Action
• Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Actionexternal icon.
  This report mentions that SCDC data are “used to support policy decisions at the state and federal level, inform researchers and providers via published manuscripts, and educate those living with the disease, their families and communities, and health care providers on the disease and the latest research on it.“

Abstracts/Posters

California

• County-level surveillance of sickle cell disease population, healthcare utilization, and fragmentation to support improvements in access to care pdf icon[708 KB / 1 page]external icon
• Developing a data-driven sickle cell disease public health surveillance agenda in California pdf icon[134 KB / 2 pages]external icon
• Emergency department utilization by Californians with sickle cell disease, 2005-2014 pdf icon[140 KB / 3 pages]external icon
• Maternal deaths among California women with sickle cell disease 2004-2014 pdf icon[41.7 KB / 1 page]external icon
• Mortality among California’s Sickle Cell Data Collection cohort, 2005-2014 pdf icon[218 KB / 1 page]external icon
• Pregnancy outcomes for California women with sickle cell disease pdf icon[241 KB / 1 page]external icon

Georgia

• Newborn screening data for sickle cell disease in California and Georgia, 2004-2016: Implications for health interventionsexternal icon
• Accuracy of ICD-9 coding for sickle cell disease (SCD) in children and adolescents: Results from the GA RuSH surveillance projectexternal icon
• Constructing a Georgia surveillance system for hemoglobinopathies using multiple data sets: the first step towards a comprehensive prevention and service delivery strategyexternal icon
• Using multiple data sets to build a surveillance system for hemoglobinopathies: Early lessons from Georgiaexternal icon