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.
- Okolo AI, Jacob SA, Dixon BE, Valvi NR, Janson IA, Hardesty BR. Increasing visibility of sickle cell disease in Indiana: Establishing baseline prevalence using integrated data from multiple sources. Public Health Rep. 2023 May 26;333549231170229. doi: 10.1177/00333549231170229.
- Paulukonis ST, Snyder A, Smeltzer MP, Sutaria AN, Hurden I, Latta K, Chennuri S, Vichinsky E, Reeves SL. COVID-19 infection and outcomes in newborn screening cohorts of sickle cell trait and sickle cell disease in Michigan and Georgia. J Pediatr Hematol Oncol. 2023 May 1;45(4):174-180. doi: 10.1097/MPH.0000000000002671. Epub 2023 Mar 20.
- Reeves SL, Horiuchi S, Zhou M, Paulukonis S, Snyder A, Wilson-Frederick S, Hulihan M. Case ascertainment of sickle cell disease using surveillance or single administrative database case definitions. Public Health Rep. 2023 May 19;333549231166465. doi: 10.1177/00333549231166465.
- Singh A, Sontag MK, Zhou M, Dasgupta M, Crume T, McLemore M, Galadanci N, Randall E, Steiner N, Brandow AM, Koch K, Field JJ, Hassell K, Snyder AB, Kanter J. Evaluating the discriminatory ability of the Sickle Cell Data Collection program’s administrative claims case definition in identifying adults with sickle cell disease: Validation study. JMIR Public Health Surveill. 2023 Jun 28;9:e42816. doi: 10.2196/42816.
- Smeltzer MP, Reeves SL, Cooper WO, Attell BK, Strouse JJ, Takemoto CM, Kanter J, Latta K, Plaxco AP, Davis RL, Hatch D, Reyes C, Dombkowski K, Snyder A, Paulukonis S, Singh A, Kayle M. Common data model for sickle cell disease surveillance: considerations and implications. JAMIA Open. 2023 May 27;6(2):ooad036. doi: 10.1093/jamiaopen/ooad036.
- Tang AY, Zhou M, Maillis AN, Lai KW, Lane PA, Snyder AB. Trends in blood transfusion, hydroxyurea use, and iron overload among children with sickle cell disease enrolled in Medicaid, 2004-2019. Pediatr Blood Cancer. 2023 Mar;70(3):e30152. doi: 10.1002/pbc.30152. Epub 2022 Dec 29. PMID: 36579749.
- Valle J, Baker JR, Madrigal D, Ferrerosa J, Paulukonis S. Sickle cell disease among Latinx in California. PLoS One. 2022 Oct 27;17(10):e0276653. doi: 10.1371/journal.pone.0276653.
- Horiuchi SS, Zhou M, Snyder A, Paulukonis ST. Hematologist encounters among Medicaid patients who have sickle cell disease. Blood Adv. 2022 Sep 13;6(17):5128-5131. doi: 10.1182/bloodadvances.2022007622.
- Kanter J, Meier ER, Hankins JS, Paulukonis ST, Snyder AB. Improving outcomes for patients with sickle cell disease in the United States: Making the case for more resources, surveillance, and longitudinal data. JAMA Health Forum. 2021 Oct 1;2(10):e213467. doi: 10.1001/jamahealthforum.2021.3467.
- Snyder AB, Lakshmanan S, Hulihan MM, Paulukonis ST, Zhou M, Horiuchi SS, Abe K, Pope SN, Schieve LA. Surveillance for sickle cell disease — Sickle Cell Data Collection program, two states, 2004–2018. MMWR Surveill Summ. 2022 Oct 7;71(9):1-18. doi: 10.15585/mmwr.ss7109a1.
- Stephenson, J. Too few children, teens with sickle cell anemia receive screening, medication to prevent serious complications. JAMA Health Forum. 2022 Nov 4;3(11):e224780. doi: 10.1001/jamahealthforum.2022.4780.
- Mathias JG, Nolan VG, Klesges LM, Badawy SM, Cooper WO, Hankins JS, Smeltzer MP. Hydroxyurea use after transitions of care among young adults with sickle cell disease and Tennessee Medicaid insurance. JAMA Netw Open. 2021 Oct 1;4(10):e2128971. doi: 10.1001/jamanetworkopen.2021.28971. PMID: 34643722.
- Wong TE, Valle J, Paulukonis S. Concurrent use of hydroxyurea and deferasirox in Californians with sickle cell disease. Health Sci Rep. 2021;4:e323. doi: 10.1002/hsr2.323.
- 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, 2005-2016 [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 approach. 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 disease. Pediatr Blood Cancer. 2020 May;67(5):e28152.
- 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.
- Tang A, Branscomb J, Zhou M, Snyder A, Eckman J. Characterizing complication risk from multisite, intermittent transfusions for the treatment of sickle cell disease. Pediatr Blood Cancer. 2019 Oct;66(10):e27921.
- 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.
- 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.
- SCDC Report: Georgia
- SCDC Report: California [922 KB / 28 pages]
- SCDC Program Report: Data To Action
- Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action.
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.“
- 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]
- Newborn screening data for sickle cell disease in California and Georgia, 2004-2016: Implications for health interventions
- Accuracy of ICD-9 coding for sickle cell disease (SCD) in children and adolescents: Results from the GA RuSH surveillance project
- Constructing a Georgia surveillance system for hemoglobinopathies using multiple data sets: the first step towards a comprehensive prevention and service delivery strategy
- Using multiple data sets to build a surveillance system for hemoglobinopathies: Early lessons from Georgia