Improving the Lives of People with Sickle Cell Disease
Presented on .
Sickle cell disease (SCD) describes a group of inherited disorders that can cause red blood cells to develop in an abnormal rigid sickle or crescent shape. These inflexible sickle-shaped cells can stick to the walls of blood vessels and block the flow of blood completely, leading to a lack of oxygen in surrounding tissues. In addition to sudden, excruciating pain events known as pain crises, SCD can lead to strokes, organ damage, joint and bone problems, and other severe health consequences. The effects of SCD begin around 5 or 6 months of age and continue over a person’s lifetime. There is no national registry for SCD, but experts estimate that this disease affects approximately 100,000 people in the United States alone.
Over the past 30 years, treatments for SCD and its complications have improved average life expectancy, but these treatments can be costly and invasive. Additionally, healthcare needs and access to care may change over the course of a patient’s life. Through continued collaboration with clinicians, researchers and the SCD community, we can identify critical gaps and better understand how these treatments can improve the lives of people with SCD.
This session of Public Health Grand Rounds discusses SCD, what we know, and how far we have come in just a few decades.
In this session of Beyond the Data, Dr. Phoebe Thorpe and Dr. Kathryn Hassell discuss sickle cell disease, what it is, and how far care, treatment, and patient outcomes have come in the last 30 years.
- Mary Hulihan, DrPH
- Health Scientist, Epidemiology and Surveillance Branch,
Division of Blood Disorders
National Center on Birth Defects and Developmental Disabilities, CDC
- Kim Smith-Whitley, MD
- Director, Comprehensive Sickle Cell Center
Children's Hospital of Philadelphia
- Kathryn Hassell, MD
- Professor of Medicine, Division of Hematology
University of Colorado Denver
- Jean Raphael, MD, MPH
- Associate Professor of Pediatrics
Baylor College of Medicine
- John Iskander, MD, MPH
- Scientific Director
- Phoebe Thorpe, MD, MPH
- Deputy Scientific Director
- Susan Laird, MSN, RN
- Communications Director
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- Presentation Slide Deck [2.69 MB, 65 Pages, HTML]
- Sickle Cell Disease (SCD)
- RuSH Project PHRESH Project Sickle Cell Data Collection (SCDC) Program SCDC Program Fact Sheet Webinars Publications Thalassemia Data Collection & Blood Safety Monitoring Transfusion Complications Monitoring Sickle Cell Disease Thalassemia Blood Disorders Information For… Media Policy Makers Hemoglobinopathies Monitoring HomeSickle Cell Data Collection (SCDC) Program CDC’s Sickle Cell Data Collection (SCDC) Program
- What is Sickle Cell Disease?
CDC Course Code: PHGR10
CPE UAN: 0387-0000-16-109-H04-P
For more information, see Grand Rounds Continuing Education.