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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




















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.

STAMP

Sickle Cell Disease Training And Mentoring Program

Sickle Cell Disease Telehealth Series for Primary Care Providers

Many adults living with sickle cell disease (SCD) have challenges accessing care due to a national shortage of SCD-trained hematologists. To help address this gap, the Health Resources and Services Administration (HRSA) is collaborating with the HHS Office of Minority Health to deliver a new telehealth series for primary care providers called STAMP, the SCD Training and Mentoring Program. This free series, taught by hematologists using a case study-based, tele-mentoring approach, will cover the basics of SCD care, such as pain management, hydroxyurea, and preventive services.

 

For a schedule of STAMP training and to sign up for an SCD teleECHO clinic please see the calendar below. Participating primary care providers will also be eligible to request on-demand consultative services from hematologists to further support patient care.


 

 

To register for STAMP teleECHO clinic session, click on the button below and send the auto populated email. No information is needed in the body of the email. Registrants will receive a welcome email and other materials in advance of the clinic. Once registered, details will be sent to on how to connect with the teleECHO platform.

 

Doctor in discussion around table

 

 

 

Training Calendar

January 2020

Date

Time

Topic

Speaker

1/8/2020 12:00 PM EST Update on Pathophysiology of SCD Sophie Lanzkron
1/16/2020 2:00 PM EST Hydroxyurea for Adults Russell Ware

February 2020

Date

Time

Topic

Speaker

2/4/2020 2:00 PM EST Imaging Uncomplicated Headache in SCD James Harper
2/18/2020 5:00 PM EST Screening Assessments in SCD Julie Kanter

March 2020

Date

Time

Topic

Speaker

3/5/2020 3:00 PM EST Transfusion in SCD Trisha Wong

Webinars

  June 2019 Webinar coming soon

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

 

  June 2019 Webinar coming soon

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

 

  June 2019 Webinar coming soon

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

 

June 2019 Webinar coming soon

NHLBI Webinar
Improvement Initiatives and Ongoing Research
September 25, 2019
View Webinar.

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
Thursday, September 20, 2018.
View Webinar.
 

 

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
Thursday, February 28, 2019.
View Webinar.
 

 

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

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: 

 

  • Engaging academic researchers, private sector researchers, and patients and their caregivers to develop strategies for cures.
  • Determining the safest, most effective, and most readily and widely adoptable genetic therapies.
  • Move newly developed genetic therapies, including gene-editing approaches, into clinical research.
  • 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
Sickle Cell image - Image of normal red blood cell and sickle cell

Participate in clinical trial

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.