Sickle Cell Database

"The Centers for Disease Control and Prevention (CDC) is working to improve the lives of people with sickle cell disease (SCD), an inherited blood disorder. Learn about CDC’s SCDC program, and find a suite of online resources that can help you or someone you know live healthy with SCD.

Sickle cell disease (SCD) is a blood disorder present at birth. People with SCD have sickle-shaped red blood cells that stick together and block blood and oxygen from reaching all parts of the body, leading to health problems such as pain, anemia, infections, and stroke. Approximately 100,000 Americans are affected by SCD. CDC is committed to studying SCD to improve the health and care of people with this condition.

The Sickle Cell Data Collection (SCDC) Program

The SCDC program works with teams in the shaded states on the map below to collect and link data from several sources.

The SCDC program, which has been ongoing since 2015, collects health information about people with SCD to study the long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. Currently, there are 11 states participating in the SCDC program. As more resources become available, CDC plans to expand the program to include additional states. The program will help inform policy and healthcare standards to improve and extend the lives of people with SCD.

Learn more about the SCDC program:

• SCDC Program Fact Sheet
• SCDC Surveillance Summary
• SCDC Program Data
• SCDC Publications
• SCDC Policy Memo: Understanding Sickle Cell Disease: CDC’s Role in Surveillance, Education, and Awareness
• The Bloodline Newsletter is a quarterly e-newsletter providing updates about the SCDC Program. Visit the webpage to subscribe..."
  Sickle Cell Collection 

Did You Know Sickle Cell Has Many Faces?

"Sickle cell disease (SCD) is an inherited blood disorder that causes “sickle” shaped red blood cells that can stick together, blocking blood flow and oxygen from reaching all parts of the body. People with SCD can experience pain, anemia, infection, and other serious health problems (also known as complications) that may require care by a healthcare provider. When health problems, such as serious pain (also known as pain crises), cannot be managed at home or a visit to a healthcare provider is not possible, children and adults with SCD often require care in hospital emergency departments (ED) or clinics for treatment. In fact, the Sickle Cell Data Collection (SCDC) program (CDC’s current SCD monitoring project) found that, in California, people with SCD seek care in the ED an average of three times a year from their late teens to their late 50s.."
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Caregivers and Sickle Cell Disease

"Caregivers are responsible for the physical care and emotional support of those unable to care for themselves due to illness, injury, or disability (a condition that affects major life activities).

The challenges of caring for a loved one with a chronic disease, like sickle cell disease (SCD), can be isolating and overwhelming. Life as you know it ends, and you begin to spend all of your time and energy caring for your loved one. For many, however, caregiving is also a rewarding experience, bringing family members closer together.

Learn the Effect Sickle Cell Disease Has on Family Members & Caregivers

Sickle cell disease (SCD) is a blood disorder present at birth. People with SCD have “sickle” shaped red blood cells that stick together and block blood and oxygen from reaching all parts of the body, leading to health problems such as pain, anemia, injections, and stroke. Approximately 100,000 Americans are affected by SCD. CDC is committed to studying SCD to improve the health and care of people with this condition.

Below we share short vignettes (or snippets) from real life stories of two caregivers of young adults with SCD, as well as the perspective of a young adult with SCD and the effect his condition had on his caregivers. Their experiences help shine a light on the:

• Role of caregivers;
• Effect SCD has on a caregiver’s life;
• Struggles and challenges faced by caregivers; and
• Ways caregivers have overcome challenges in order to keep their family safe and healthy..."
  Caregivers and Sickle Cell

Sickle Cell Disease Monitoring

"CDC is working to improve the lives of people with sickle cell disease (SCD), an inherited blood disorder. Learn about CDC’s SCD monitoring projects, and find a suite of online resources that can help you or someone you know live healthy with SCD.

Sickle cell disease (SCD) is a blood disorder present at birth. People with SCD have “sickle” shaped red blood cells that stick together and block blood and oxygen from reaching all parts of the body, leading to health problems such as pain, anemia, infections, and stroke. Approximately 100,000 Americans are affected by SCD. CDC is committed to studying SCD to improve the health and care of people with this condition.

CDC Monitoring Projects

CDC, and participating states, began SCD surveillance (monitoring) in 2010 to learn more about people with SCD and the health problems they experience. SCD monitoring involves collecting information on diagnoses, treatments, and healthcare access for people with SCD in the United States.

CDC coordinated these efforts as part of three projects:

• Registry and Surveillance System for Hemoglobinopathies (RuSH) (from 2010-2012)
• Public Health Research, Epidemiology, and Surveillance for Hemoglobinopathies (PHRESH) (from 2012-2014)
• Sickle Cell Data Collection (SCDC) program (ongoing since 2015)

The SCDC program, which has been ongoing since 2015, is CDC’s current monitoring project. The SCDC program collects health information about people with SCD to study the long-term trends in diagnosis, treatment, and healthcare access for people with SCD in the United States. Currently, Georgia and California are the states participating in the SCDC program. As more resources become available, CDC plans to expand the program to include additional states. The program will help inform policy and healthcare standards to improve and extend the lives of people with SCD..."
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Sickle Cell Awareness

"CDC is working to raise awareness about sickle cell disease. You can help by reading and sharing our resources with friends and family.

Sickle cell disease (SCD) is an inherited blood disorder that is present at birth and affects approximately 100,000 Americans. CDC is committed to studying SCD and other blood disorders in order to improve the health and care of people with these conditions.

Online Resources

• Sickle Cell Trait Toolkit is a collection of fact sheets about sickle cell trait.
• Sickle Cell Disease National Resource Directory is a listing of national agencies, specialty healthcare centers, and community-based organizations that provide services and resources for people affected by SCD. The goal of this directory is to help people find SCD services and resources. Users can search for Providers/Sickle Cell Centers, Non-Profits/Associations/Foundations, and Support Groups within their state.
• Stepping Up: A 2-part video series for teenagers & young adults with SCD shares the stories of Kevin and Calvanay about their transition to adult care, how it has affected them and how they’ve overcome challenges. Spanish transcripts of the videos are available online.
• Provider Training Video Series: “Reducing Complications of Therapeutic Blood Transfusions in Sickle Cell Disease” is a four-part educational video series for healthcare providers. Created in collaboration with the CDC and the Georgia Health Policy Center, the training series is designed to provide information about and strategies for reducing transfusion complications in people with SCD. For CME/CNE credits, go to cdc.gov/TCEOnline, click search and type in the course number and the module title. The course number starts with a ‘WD’ and is followed by 4 numbers.
• In a CDC Expert Commentary on Medscape about transfusions in SCD, Dr. Mary Hulihan, a Health Scientist in the Division of Blood Disorders at CDC discusses scenarios in which transfusions are appropriate for people with SCD, the complications associated with transfusions, and how to reduce the risk of complications from transfusions.
• SCD Resources in Spanish are available on our Spanish webpage. You can find free, informative materials on SCD, such as fact sheets and infographicsin Spanish..".

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Living well with SCD

"College students with sickle cell disease (SCD) can have a fun and safe college experience by taking a few safety precautions to keep themselves healthy.

SCD is an inherited blood disorder that can cause severe pain. So for students with SCD, the transition of leaving home to go to college can be a fun and exciting experience, but also challenging. By making smart health decisions, students with SCD can live full lives and enjoy their college experience. Read below to learn nine tips on how students with SCD can stay safe and healthy while at school..."

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Sickle Cell Disease

"CDC has created a new booklet for teachers of students with sickle cell disease (SCD), Tips for Supporting Students with Sickle Cell Disease[969 KB].
This booklet:

• describes SCD and identifies roles for teachers, other school staff and parents/caregivers to support students living with SCD
• identifies ways SCD may impact a student's daily life and describe how school staff can make accommodations (i.e., adjustments to the classroom setting or instruction) to meet the needs of children who may experience health problems associated with SCD during the school day
• provides information on ways SCD might impact education outcomes and information about pain, stroke, and symptoms associated with SCD that school personnel should know.." 
• Sickle cell students

Test Your Knowledge: Sickle Cell Disease

"September is Sickle Cell Disease (SCD) Awareness Month. How much do you know about SCD? Take a quiz to find out and learn about the Centers for Disease Control and Prevention’s (CDC’s) work..."
Sickle Cell Disease