National Center on Birth Defects and Developmental Disabilities (NCBDDD)

Strategic Plan - Sickle Cell Disease

Sickle cell disease (SCD) is the most common hereditary blood disorder in the United States, affecting an estimated 70,000-100,000 Americans.

In the United States, African-Americans are affected most by the disease with 1 in 500 newborns having SCD. Other affected racial and ethnic groups include Hispanics, Asians and people of Mediterranean and Middle Eastern descent.
The cost to individuals with SCD and to the health care system is high with the Agency for Healthcare Quality and Research estimating that hospital stays for SCD patients cost an estimated $488 million in 2004.

Overall, people with sickle cell disease have less access to comprehensive team care than people with genetic disorders such as hemophilia and cystic fibrosis.
Because there is no widely available cure for SCD, the goal for treatment of SCD is the prevention of complications.

Develop a national surveillance system to collect information on SCD and its complications to help determine incidence and prevalence of the disease as well as the number and extent of complications from the disease and its treatment.
Evaluate models of health service delivery for people with SCD.
Collaborate with professional and community-based organizations to develop campaigns and materials that will inform and educate the public while improving the evidence-based practice of providers.