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..."
Sickle cell disease

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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Sickle Cell: Taking Charge of Your Health and Health Care

"This World Sickle Cell Day (observed every year on June 19), the Centers for Disease Control and Prevention (CDC) is raising awareness around sickle cell disease and ‘transition.’

Transition is the process of young people with sickle cell disease (SCD), a genetic blood disorder, learning to become more responsible for their health and transferring their health care to an adult healthcare provider. Learn about transitioning care with SCD, read tips to prepare for it, and find more resources to help manage transition.

For teens with sickle cell disease, transition is part of maturing into an adult.

Sickle cell disease (SCD) is a genetic blood disorder affecting red blood cells. People with SCD have abnormally shaped red blood cells that block oxygen from reaching the body’s tissues and organs. SCD is present at birth, and mild to severe health problems, such as pain crises, infection, and stroke can affect people with SCD throughout their lifetime.

When a child with SCD is young, parents or other adult caregivers are responsible for managing the child’s health and healthcare needs. Parents or other adult caregivers will schedule doctor’s appointments, manage treatment schedules, and make sure the child is both eating healthy and sleeping well to reduce the severity and occurrence of pain crises and other SCD-related health problems.."
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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 Trait Toolkit!

"Did you know that 1.5% of babies born in the United States have Sickle Cell Trait (SCT). That’s almost 1 in every 50 babies! While people with SCT often lead normal lives with few health problems, it is important for people with SCT to be aware of their trait status and the risk of passing it on to their children. The Sickle Cell Trait Toolkit provides valuable information for people with SCT.

What is sickle cell trait?

Sickle cell disease (SCD) is a genetic condition that is present at birth. It is inherited when a child receives two sickle cell genes—one from each parent. People who inherit a sickle cell gene from one parent and a normal gene from their other parent have sickle cell trait (SCT). People with SCT usually do not have any of the signs of sickle cell disease and typically live a life without any problems from their sickle cell gene. However, they can pass the trait on to their children. Additionally, there are a few, uncommon health problems[763 KB] that may potentially be related to sickle cell trait.

What is the sickle cell trait toolkit?

CDC, together with the American Society of Hematology (ASH) and the Sickle Cell Disease Association of America (SCDAA) , created the Sickle Cell Trait Toolkit, an online collection of educational materials related to SCT. We hope that the tools and resources provided are both helpful and informative, and they empower you or those you know with SCT to learn more and take action..."
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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