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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


 

Annals if Emergency Medicine logo
Annals of Emergency Medicine: The State of Sickle Cell Disease Care in the United States: How Can Emergency Medicine Contribute?

 
 
 

AHRQ logo
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.

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.

 

Webinars

  June 2019 Webinar coming soon

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

 

  June 2019 Webinar coming soon

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

 

  June 2019 Webinar coming soon

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

 

June 2019 Webinar coming soon

NHLBI Webinar
Improvement Initiatives and Ongoing Research
September 25, 2019

 

Click to view webnar - Sickle Cell Transitional Care from Childhood to Adulthood: The Role of Community Health Workers - YouTube link

This webinar was held on
September 20, 2018.



 

Thursday, February 28. 2019 - Holistic Health and Sickle Cell Disease: A Focuse on Mental and Behavioral Health - 1pm - 2:15 PM ET

This webinar was held on
February 28, 2019.



 

SICKLE CELL STORIES

Sickle Cell affects thousands of people in the United States. OMH’s #SickleCellStories features a conversation with Assistant Secretary for Health ADM Brett P. Giroir and Surgeon General VADM Jerome M. Adams about HHS efforts to address SCD & the stories of people living with SCD, family members and advocates.

 

 






RESOURCES

Sickle Cell Disease Toolkit
 
Sickle Cell Disease Bibliographies
 

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 that are related to sickle cell disease and see if you or someone you know is eligible to participate in one of them.
 


Community Stories

The Cure Sickle Cell Initiative is a collaborative, patient-focused research effort designed 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, as well as 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 made in sickle cell research and the importance of community engagement to advance 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