CDC’s website is being modified to comply with President Trump’s Executive Orders.

SCDC Publications

At a glance

Below is a list of recent scientific articles generated from CDC programs and activities.

Articles illustration icon

CDC scientific articles

2024

The Prevalence of Sickle Cell Disease in Colorado and Methodologies of the Colorado Sickle Cell Data Collection Program: Public Health Surveillance Study. JMIR Public Health Surveill. 2024;10:e64995. Miller JI, Hassell KL, Kellar-Guenther Y, Quesada S, West R, Sontag M.

Immunization adherence among children with sickle cell disease and sickle cell trait: Results of a population-based study. Pediatr Blood Cancer. 2024;71(7):e31042. Shi JS, Sutaria A, Lakshmanan S, Attell B, Zhou M, Tang A, Eckman J, Snyder A.

COVID-19 Immunization Coverage Among People With Sickle Cell Disease. JAMA Netw Open. 2024;7(1):e2351618. Peng HK, Dombkowski KJ, Plegue MA, Latta K, Malosh R, Creary MS, Reeves SL.

Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together. Prog Community Health Partnersh. 2024;18(3):371-380. Young AJ, Maresh A, Pope S, Blaylark R, Lakshmanan S, Stephens L, Aderojou R, Meier E, Gibson G, Okolo A, Cromartie S, Coker N, Paulukonis S, Fields J, Kaur M, Desai J.

See text description
Visual abstract for publication: Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together

CDC’s Sickle Cell Data Collection Program builds bridges between community-based organizations and scientists. What did we learn from these partnerships?

-Priorities trust-building

-Establish shared goals and define expectations

-Leverage strengths for mutual benefit

-Incorporate community voices from the beginning

-Foster open communication

-Seek out diverse partnerships and perspectives

Consider how these lessons can help your program build stronger partnerships.

Young AJ, Maresh A, Pope S, et al. Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together. Prog Community Health Partnersh. 2024;18(3):371-380.

National Quality Indicators in Pediatric Sickle Cell Anemia. Pediatrics. 2024;153(4):e2022060804. Anderson AT, Mack WJ, Horiuchi SS, Paulukonis S, Zhou M, Snyder AB, Doctor JN, Kipke M, Coates T, Freed G.

Opioid Use After First Opioid Prescription in Children With Sickle Cell Disease. JAMA Pediatr. 2024;178(4):408-410. Snyder AB, Zhou M, Attell BK, Cohen LL, Carter S, Bock F, Dampier C.

Examining community-level social vulnerability and emergency department use for people living with sickle cell disease in Michigan. Pediatr Blood Cancer. 2024;e31225. Swallow J, Latta K, Plegue M, Peng HK, Tipirneni R, Smith D, Lê-Scherban F, Dombkowski KJ, Reeves SL.

Acute care utilization among individuals with sickle cell disease and related cardiopulmonary and renal complications. PLoS One. 2024;19(4):e0297469. Singh A, Brousseau DC, Dasgupta M, Shet AS, Field JJ, Brandow AM.

Assessing patterns of telehealth use among people with sickle cell disease enrolled in Medicaid during the start of the COVID-19 pandemic.
Telemed J E Health. 2024. Reeves SL, Plegue M, Patel PN, Paulukonis ST, Horiuchi SS, Zhou M, Attell BK, Pace BS, Snyder AB, Plaxco AP, Mukhopadhyay A, Smeltzer MP, Ellimootil CS, Hulihan M.

Emergency department utilization before and during the COVID-19 pandemic among individuals with sickle cell disease. BMC Emerg Med. 2024;24(1):134. Attell BK, Plaxco AP, Zhou M, Valle J, Reeves SL, Patel PN, Latta K, Smeltzer MP, Snyder AB.

Prevalence, mortality, and access to care for chronic kidney disease in Medicaid-enrolled adults with sickle cell disease in California: Retrospective cohort study. JMIR Public Health Surveill. 2024;10:e57290. Valle J, Lebensburger JD, Garimella PS, Gopal S.

Emergency department 30-day emergency department revisits among people with sickle cell disease: variations in characteristics. Pediatr Blood Cancer. 2024;e31188. Rushing M, Horiuchi S, Zhou M, Kavanagh PL, Reeves SL, Snyder A, Paulukonis S.

Medicaid coverage in early childhood for children with sickle cell disease. JAMA Netw Open. 2024;7(7):e2421491. Horiuchi SS, Reeves SL, Plaxco AP, Peng HK, Zhou M, Kayle M, Hulihan M.

Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability — Sickle Cell Data Collection Program, 11 States, 2016–2020.
MMWR Morb Mortal Wkly Rep 2024;73:248–254. Kayle M, Blewer AL, Pan W, et al.

infographic, text description to follow.
Visual abstract for publication: Birth Prevalence of Sickle Cell Disease and County-Level Social Vulnerability — Sickle Cell Data Collection Program, 11 States, 2016–2020.

Children with sickle cell disease (SCD) have complex health needs that benefit from ongoing specialized health care

2 of 3 newborns with SCD are born to mothers who live in U.S. counties with high levels of social vulnerability* Social vulnerability includes factors such as poverty, lack of vehicle access, and crowded housing

Communities can provide support by:

-Developing medical transportation reimbursement programs

-Developing innovative comprehensive care models

*State newborn screening program records, Sickle Cell Data Collection Program, 2016-2020

bit.ly/mm7312a1

March 28, 2024

2023

Characteristics of Emergency Department Visits Made by Individuals With Sickle Cell Disease in the U.S., 1999-2020. AJPM Focus. 2023;3(1):100158. Attell BK, Barrett PM, Pace BS, McLemore ML, McGee BT, Oshe R, DiGirolamo AM, Cohen LL, Snyder AB.

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;9:e42816. 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.

Timeliness of Opioid Administration for Pain in the Emergency Department for Adults with Sickle Cell Disease. Blood. 2023; 142 (Supplement 1): 3738. Singh A, Brousseau D.C., Osinski K, Brandow A.M.

Increasing visibility of sickle cell disease in Indiana: Establishing baseline prevalence using integrated data from multiple sources. Public Health Rep. 2023;333549231170229. Okolo AI, Jacob SA, Dixon BE, Valvi NR, Janson IA, Hardesty BR.

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;45(4):174-180. Paulukonis ST, Snyder A, Smeltzer MP, Sutaria AN, Hurden I, Latta K, Chennuri S, Vichinsky E, Reeves SL.

Case ascertainment of sickle cell disease using surveillance or single administrative database case definitions. Public Health Rep. 2023;333549231166465. Reeves SL, Horiuchi S, Zhou M, Paulukonis S, Snyder A, Wilson-Frederick S, Hulihan M.

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. 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.

Common data model for sickle cell disease surveillance: considerations and implications. JAMIA Open. 2023;6(2):ooad036. 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.

2022

Surveillance for the Rare Condition of Sickle Cell Disease in Wisconsin. WMJ. 2022;121(4):297-300. Singh A, Dasgupta M, Retherford D, Baker M, Hulihan M, Brandow AM.

Telehealth Use Before and During the COVID-19 Pandemic Among Children with Sickle Cell Anemia. Telemed J E Health. 2022;28(8):1166-1171. Reeves SL, Patel PN, Madden B, Ng S, Creary SE, Smith D, Ellimoottil C.

Trends in blood transfusion, hydroxyurea use, and iron overload among children with sickle cell disease enrolled in Medicaid, 2004–2019. Pediatr Blood Cancer. 2022;70(3):e30152. Tang AY, Zhou M, Maillis AN, Lai KW, Lane PA, Snyder AB.

Sickle cell disease among Latinx in California.
PLoS One. 2022;17(10):e0276653. Valle J, Baker JR, Madrigal D, Ferrerosa J, Paulukonis S.

Hematologist encounters among Medicaid patients who have sickle cell disease.
Blood Adv. 2022 Sep 13;6(17):5128-5131. Horiuchi SS, Zhou M, Snyder A, Paulukonis ST.

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;2(10):e213467. Kanter J, Meier ER, Hankins JS, Paulukonis ST, Snyder AB.

Surveillance for sickle cell disease — Sickle Cell Data Collection program, two states, 2004–2018.
MMWR Surveill Summ. 2022;71(9):1-18. Snyder AB, Lakshmanan S, Hulihan MM, Paulukonis ST, Zhou M, Horiuchi SS, Abe K, Pope SN, Schieve LA.

Too few children, teens with sickle cell anemia receive screening, medication to prevent serious complications.
JAMA Health Forum. 2022;3(11):e224780. Stephenson, J.

2021

Hydroxyurea use after transitions of care among young adults with sickle cell disease and Tennessee Medicaid insurance.
JAMA Netw Open. 2021;4(10):e2128971. Mathias JG, Nolan VG, Klesges LM, Badawy SM, Cooper WO, Hankins JS, Smeltzer MP.

Concurrent use of hydroxyurea and deferasirox in Californians with sickle cell disease.
Health Sci Rep. 2021;4:e323. Wong TE, Valle J, Paulukonis S.

2020

Using surveillance to determine the number of individuals with sickle cell disease in California and Georgia, 2005-2016
Pediatr Hematol Oncol. 2020;1-5. Aluc A, Zhou M, Paulukonis ST, Snyder AB, Wong D, Hulihan MM.

Acute care utilization at end of life in sickle cell disease: Highlighting the need for a palliative approach.
J Palliat Med. 2020;23(1):24-32. Johnston EE, Adesina OO, Alvarez E, Amato H, Paulukonis S, Nichols A, Chamberlain LJ, Bhatia S.

Impact of Medicaid expansion on access and healthcare among individuals with sickle cell disease.
Pediatr Blood Cancer. 2020;67(5):e28152. Kayle M, Valle J, Paulukonis S, Holl JL, Tanabe P, French DD, Garg R, Liem RI, Badawy SM, Treadwell MJ.

2019

Improving an administrative case definition for longitudinal surveillance of sickle cell disease.
Public Health Rep. 2019;134(3):274-281. Snyder AB, Zhou M, Theodore R, Quarmyne MO, Eckman J, Lane PA.

Characterizing complication risk from multisite, intermittent transfusions for the treatment of sickle cell disease.
Pediatr Blood Cancer. 2019;66(10):e27921. Tang A, Branscomb J, Zhou M, Snyder A, Eckman J.

2018

SCDC Program Report: Data to Action

2017

CDC Grand Rounds: Improving the lives of persons with sickle cell disease.
MMWR Morb Mortal Wkly Rep. 2017; 66:1269–1271. Hulihan M, Hassell KL, Raphael JL, Smith-Whitley K, Thorpe P.

Emergency department utilization by Californians with sickle cell disease, 2005–2014.
Pediatr Blood Cancer. 2017; 64(6). Paulukonis ST, Feuchtbaum LB, Coates TD, Neumayr LD, Treadwell MJ, Vichinsky EP, 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. Snyder AB, Lane PA, Zhou M, Paulukonis ST, Hulihan MM.