Publications

Pacific SCD Facts about Sickle Cell Disease infographic

Resources

 UCLA Institute of American Cultures. (n.d.). Multilingual
Resource Hub https://www.translatecovid.org/

Kanter J, Meier ER, Hankins JS, Paulukonis ST, Snyder AB. Improving Outcomes for Patients With Sickle Cell Disease in the United StatesMaking the Case for More Resources, Surveillance, and Longitudinal DataJAMA Health Forum. 2021;2(10):e213467. doi:10.1001/jamahealthforum.2021.3467

Articles

2021 NICHQ Sickle Cell Disease Congressional Report

Kanter, J., et al. Building access to care in adult sickle cell disease: defining models of care, essential components, and economic aspects. Blood Adv 2020; 4 (16): 3804–3813.

Corder-Mabe, J., et al. Development of a Framework to Describe Functions and Practice of Community Health Workers, Journal of Continuing Education in the Health Professions (2019), 39:4, 265-269.

Centers for Disease Control and Prevention (May 2020). Data Brief: Healthcare Utilization for Vaso-occlusive Episodes by People with Sickle Cell Disease in California and Georgia, 2015.

U.S. Department of Health and Human Services (2019, May). Pain Management Best Practices Inter-Agency Task Force Report: Updates, Gaps, Inconsistencies, and Recommendations.

Cronin, R., et al. Modifying factors of the health belief model associated with missed clinic appointments among individuals with sickle cell disease, Hematology (2018), 23:9, 683-691.

Nihara, Y., et al. A Phase 3 Trial of l-Glutamine in Sickle Cell Disease N Engl J Med (2018) ;379:226-35.

Agrawal AK, et al. Virtual reality as complementary pain therapy in hospitalized patients with sickle cell disease. Pediatr Blood Cancer. 2019;66:e27525

Vichinsky, Elliott. Chronic organ failure in adult sickle cell disease. Hematology (2017), 435-439.

Evensan, et al. Quality of care in sickle cell disease Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care. Medicine (2016), 1-7.

Hydroxyurea Brochures

Minimum Data
Set