• 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.

Health Policy refers to the “…Decisions, plans, and actions that are undertaken to achieve specific health care goals within a society.”

Our policy work seeks to build effective healthcare services and systems including clinical care, workforce, surveillance, outreach and education to address the needs of people and families affected by Sickle Cell Disease region-wide.

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This website is partially supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $582,000. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by HRSA, HHS or the U.S. Government.