Sickle Cell Disease and Trait:
What Texas Health Steps Providers Need to Know

Choose any section below to learn more.

Sickle Cell Overview

Responding to a Sickle Cell Diagnosis

Ongoing Treatment and Care Management

Referrals and Resources

Many children with sickle cell anemia (are) not receiving lifesaving screening and treatment.

Centers for Disease Control and Prevention, 2022

Resources

• Appendix of Resources for Health-Care Providers

  Ashorobi, D., & Bhatt, R. (2022). Sickle Cell Trait. StatPearls.

  Centers for Disease Control and Prevention. (2022). Sickle Cell Disease.

  Centers for Disease Control and Prevention. (2021). Sickle Cell Data Collection (SCDDC) Program.

  Electronic Preventive Services Selector, a web-based tool for mobile devices that allows for primary care clinicians to identify screening, counseling, and preventive medication services recommended by the U.S. Preventive Services Task Force.

  Endari (L-glutamine oral powder) prescribing information.

  Information Center for Sickle Cell and Thalassemic Disorders.

  National Center for Biotechnology Information Genes and Disease, a collection of articles.

  National Heart, Lung, and Blood Institute. (2014). Management of Sickle Cell Disease: Summary of the 2014 Evidence-Based Report by Expert Panel Members. JAMA, 312(10), 1033-1048.

  National Institute of Health, National Institute of Diabetes and Digestive and Kidney Diseases. (2020). Sickle Cell Trait & Other Hemoglobinopathies & Diabetes (For Providers).

  Ochocinski, D., Dalal, M., Black, L. V., Carr, S., Lew, J., Sullivan, K., & Kissoon, N. (2020). Life-Threatening Infectious Complications in Sickle Cell Disease: A Concise Narrative Review. Frontiers in Pediatrics, 8(38).

  Oxbryta (Voxelotor tablets) prescribing information.

  Sickle Cell Disease Association of America.

  Sickle Cell Information Center.

  Texas Department of State Health Services, Newborn Screening Program. (2022). Sickle Cell Disease.

  Texas Department of State Health Services. HbSS (sickle cell anemia) ACT Sheet and FACT Sheet in English and Spanish.

  Texas Department of State Health Services. HbSΒ+-Thal (hemoglobin S/beta-thalassemia) ACT Sheet and FACT Sheet in English and Spanish.

  Texas Department of State Health Services. HbSC (hemoglobin SC disease) ACT Sheet and FACT Sheet in English and Spanish.

  Texas Department of State Health Services. Genetics Provider List.

  Texas Department of State Health Services. Newborn Screening Web Application sign up. (Scroll down to Result Reports and Remote Data Systems). Complete and submit one Facility Security Agreement per facility and one Web User Access Agreement per user.

  Texas Health Steps Periodicity Schedule.

  U.S. Department of Health and Human Services, Office of Minority Health. About Sickle Cell Disease.

• Provider Resources

  American Sickle Cell Anemia Association.

  Baby’s First Test, national newborn screening clearinghouse.

  Centers for Disease Control and Prevention. Do You Use the Emergency Department for Care of Sickle Cell Disease? What to Know Before You Go.

  Centers for Disease Control and Prevention, Sickle Cell Disease web page.

  Emory University, Sickle Cell Information Center.

  Lab Tests Online. (2020). Hemoglobinopathy Evaluation.

  March of Dimes: A Parent’s Guide to Newborn Screening, (5:11-minute video).

  Mayo Clinic. (n.d.). Sickle Cell Anemia.

  National Alliance for Caregiving.

  National Collegiate Athletic Association (NCAA), Fact Sheet on Sickle Cell Trait for Student Athletes.

  National Heart, Lung, and Blood Institute, Sickle Cell Disease.

  Navigate Life Texas, a multilingual website created by parents for parents of children with disabilities and special health-care needs. This unique site offers comprehensive, relevant and reliable information for families, professionals, advocates and others working with children who have disabilities and their families. Sponsored by the Texas Interagency Task Force on Children with Special Needs.

  Parent Companion First Five Years, a guide for Texas parents and caregivers of children with diagnosed or suspected disabilities from birth through 5 years of age.

  Sickle Cell Association of Texas - Marc Thomas Foundation. Phone: 844-994-4673 (toll-free), 512-458-9767 (Austin); 713-534-1712 (Houston); 210-899-3928 (San Antonio); 469-914-0909 (Dallas).

  Sickle Cell Disease Association of North Texas Facebook page. Phone: 817-882-0990.

  Sickle Cell Disease Association of America.

  Texas Department of State Health Services, Sickle Cell Disease web page.

  Texas Health and Human Services Commission, Aging and Disability Resource Centers. Information about state and federal health benefits; local programs and services such as home care, meals, transportation, legal help, attendant care, respite support and housing; and a list of resource center locations in Texas. ADRC help line at 855-937-2372 (855-YES-ADRC).

  Texas Health and Human Services Commission, Family Support Services. A program to help families care for children with special health-care needs at home. Services are provided by the Children with Special Health Care Needs (CSHCN) Services Program.

  Texas Health and Human Services Commission, Take Time Texas, a web page with a state inventory of respite services.

  Texas Parent to Parent, offers peer support for parents of children with special health-care needs.

• References Featured in the Course

  American Academy of Pediatrics, healthychildren.org. (2022). Sickle Cell Disease: Information for Parents.

  Hsu, L. L., Hooper, W. C., & Schieve, L. A. (2022). Prioritizing Sickle Cell

  Disease. Pediatrics, 150(6): e2022059491.

  Centers for Disease Control and Prevention. (2022). Vital Signs: Use of Recommended Health Care Measures to Prevent Selected Complications of Sickle Cell Anemia in Children and Adolescents - Selected U.S. States, 2019. Morbidity and Mortality Weekly Report, 71(39):1241-1246.

  Centers for Disease Control and Prevention. (2022). Media Statement: Many Children with Sickle Cell Anemia Not Receiving Lifesaving Screening and Treatment.

  Centers for Disease Control and Prevention. (2022). Data & Statistics on Sickle Cell Disease.

  Centers for Disease Control and Prevention. (2022). What is Sickle Cell Disease?

  Centers for Disease Control and Prevention. (2022). Rate of sickle cell disease-related death appears higher during the COVID-19 pandemic.

  Centers for Disease Control and Prevention. (n.d.). Get Screened for Sickle Cell Trait: Know Your Status.

  Cleveland Clinic. (2023). Acute Chest Syndrome.

  National Institutes of Health, National Heart, Lung, and Blood Institute. (2022). Fact Sheet: Sickle Cell Disease.

  National Institutes of Health, National Heart, Lung, and Blood Institute. (2022). Living With Sickle Cell Disease.

  National Institutes of Health, National Heart, Lung, and Blood Institute. (2022). What Is Sickle Cell Disease?

  National Institutes of Health, National Heart, Lung, and Blood Institute. (2022). Pregnancy and Sickle Cell Disease.

  National Institutes of Health, National Heart, Lung, and Blood Institute. (2014). Evidence-Based Management of Sickle Cell Disease: Expert Panel Report, 2014.

  Mayo Clinic. (2023). Sickle Cell Anemia.

  Sickle Cell Disease Association of America. (2021). FAQs: Sickle Cell Disease.

  Texas Department of State Health Services, Newborn Screening Program. (2022). Sickle Cell Disease.

  Texas Department of State Health Services. (2021). Texas Health Steps Periodicity Schedule.

  Texas Health and Human Services Commission. (2022). September Marks Sickle Cell Disease Month in Texas.