Sicklecell

ABOUT SICKLE CELL DISEASE

What is sickle cell disease?

Sickle cell disease is a genetic condition that affects the body’s red blood cells. It occurs when a child receives two sickle cell genes—one from each parent. In someone living with this disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”.

What types of health problems are connected to sickle cell disease?

When sickled red blood cells travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious problems such as infection, acute chest syndrome and stroke. The pain experienced by people living with sickle cell disease can vary in intensity and last for a few hours to a few weeks.

Who is affected by sickle cell disease?

While the disease is most common among African Americans, other racial and ethnic groups are affected, including Latinos and people of Middle Eastern, Indian, Asian and Mediterranean backgrounds. Sub-Saharan Africa has the greatest burden of disease, with more than 300,000 babies born with the disease each year. However, the disease is common enough in the United States that there are about 100,000 people currently living with sickle cell disease but uncommon enough that medical professionals rarely see sickle cell disease patients.

How is sickle cell disease diagnosed and treated? Is there a cure?

Sickle cell disease is most often discovered at birth during routine newborn screening tests at the hospital.

There is no single best treatment for all people with sickle cell disease. Treatment options are different for each person depending on their symptoms. However, only about 1 in 4 patients with sickle cell disease receive the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients.

Currently, the only cure for sickle cell disease is a bone marrow or stem cell transplant. However, these treatment options come with serious risks, require a close donor match (like a sibling) and are only used in severe cases.

Clinical trials related to a sickle cell disease cure that will work for all patients are being conducted as part of the National Institutes of Health’s Cure Sickle Cell Initiative. The goal of this initiative is to advance the development of new gene- and cell-based therapies for sickle cell disease within the next five to 10 years. See the NIH map of privately and publicly funded clinical studies around sickle cell disease in the U.S.

Sickle Cell image - Image of normal red blood cell and sickle cell

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Annals of Emergency Medicine: The State of Sickle Cell Disease Care in the United States: How Can Emergency Medicine Contribute?
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The Agency for Healthcare Research and Quality’s (AHRQ) new Healthcare Cost and Utilization Project (HCUP) Statistical Brief presents recent data, including historical trends and cost, on inpatient stays among patients with sickle cell disease.
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LATEST ADVANCES

There have been important strides made in caring for people living with sickle cell disease. Take a look at the Latest Advances such as the guidelines for sickle cell disease, health journals, medical reports and initiatives geared toward improving the quality of life for people living with this disease.

SCD RESOURCE

June 2019 Webinar coming soon

American Society of Hematology 2020 Guidelines for Sickle Cell Disease Management of Acute and Chronic Pain

JOURNAL ARTICLE

June 2019 Webinar coming soon

CDC’s Emerging Infectious Diseases Journal Article: Coronavirus Disease among Persons with Sickle Cell Disease

SCD INITIATIVE

June 2019 Webinar coming soon

HHS Office of the Chief Technology Officer Focus on Customer Experience

MEDICAL REPORT

June 2019 Webinar coming soon

National Academies of Sciences, Engineering, and Medicine Report on Sickle Cell Disease

RESOURCES

Sickle Cell Disease Toolkit
Sickle Cell Disease Bibliographies
Sickle Cell Disease Bibliographies

WEBINARS

NHLBI Webinar
Serving the Sickle Cell Disease
Community Abroad
September 4, 2019

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NHLBI Webinar
Genetic Therapies in
Sickle Cell Disease
September 11, 2019

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NHLBI Webinar
Bone Marrow Transplants, Other Therapies, and Sickle Cell Disease
September 18, 2019

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NHLBI Webinar
Improvement Initiatives and Ongoing Research
September 25, 2019

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This webinar was held on
September 20, 2018.
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This webinar was held on
February 28, 2019.
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SICKLE CELL STORIES

https://web.archive.org/web/20210923021948if_/https://www.youtube.com/embed/LtIqXhhWM7k

https://web.archive.org/web/20210923021948if_/https://www.youtube.com/embed/01aLzTAis8U

https://web.archive.org/web/20210923021948if_/https://www.youtube.com/embed/7R_cUGtQ1PM

https://web.archive.org/web/20210923021948if_/https://www.youtube.com/embed/oitHf1ef8pQ

https://web.archive.org/web/20210923021948if_/https://www.youtube.com/embed/b1flZ3axSqs

NHLBI CURE SICKLE CELL INITIATIVE

The Cure Sickle Cell Initiative was created by the National Heart, Lung, and Blood Institute (NHLBI). The Initiative aims to transform the lives of individuals living with sickle cell disease by moving the most promising therapies safely into clinical trials within five to ten years.

Other goals of the NHLBI’s Cure Sickle Cell Initiative include: 

  • The use of emerging safe and promising genetic therapies to improve the lives of individuals with sickle cell disease. 
  • Actively engaging the sickle cell disease community of patients, family members, caregivers and advocates to work together on a path to the cure. 
  • Encouraging collaboration among researchers, industry, non-profit organizations, and policy-making agencies who will play a role in curing the disease. 
  • Interested in participating in a NHLBI clinical trial on sickle cell disease? Learn more about how enroll. 

Sickle Cell image - Image of normal red blood cell and sickle cell

Participate in clinical trials

The NHLBI leads or sponsors many studies on sickle cell disease, advancing our knowledge and treatment of the condition—and you can help. Learn more about open and enrolling NHLBI clinical trials related to sickle cell disease and see if you or someone you know is eligible to participate in one of them.
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Community Stories

The Cure Sickle Cell Initiative is a collaborative, patient-focused research effort to identify safe and effective ways to treat sickle cell disease at the genetic level. People living with sickle cell disease help guide the direction of research to cure the disease and contribute to the education and participation of clinical trials in the patient and advocacy community. Click on the Community Stories below to learn more about the developments in sickle cell research and the importance of community engagement in advancing the cure of sickle cell disease.

A BRIEF HISTORY AND CURRENT THERAPIES IN SICKLE CELL DISEASE

NHLBI AND GENE THERAPY RESEARCH

THE IMPORTANCE OF COMMUNITY ENGAGEMENT

OTHER FEDERAL RESOURCES

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Improving Treatment and Care Processes for Patients with Sickle Cell Disease

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Sickle Cell Disease
Information and Resources

Sickle Cell Data Collection
Sickle Cell Disease and Blood Transfusions

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Decision Memo on Stem Cell Transplantation for Sickle Cell Disease
Prevalence of Sickle Cell Disease among Medicaid Beneficiaries in 2012

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Other Resources on
Sickle Cell Disease

Sickle Cell Disease Fact Sheet (English and Spanish)

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Genetic and Rare Diseases Information Center

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Cure Sickle Cell Initiative
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Breakdown of Sickle Cell Disease and Science-Based Information

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Clinical Trials

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Talk with Your Doctor
about Newborn Screening

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Resource on how SCD affects women