Sickle Cell Data Collection
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The 7,000 people in California living with sickle cell disease face barriers getting quality care, a lack of treatment options, and a lack of public and clinical awareness about their disease. Our data can help document the problems in the healthcare system and provide information to stakeholders.

Sickle cell disease is a severe, life-threatening genetic disease (here is information about knowing whether you could have a child with sickle cell disease). It impacts the red blood cells, causing them to harden and form a 'sickle' shape under conditions of stress, dehydration, cold temperature, or other circumstances. Those who have the disease are born with it, and it is identified via newborn screening testing at birth. While we think of the disease as a 'childhood illness,' it has a more severe impact on adults in the United States, where preventative care received by children means they will reach adulthood. The hallmark of the disease is pain, especially painful sickling 'crises' in which many red blood cells sickle at once, and blood flow becomes blocked. It is a chronic disease, often involving organ damage and sometimes stroke. There is no widespread cure, although transplant techniques may change that in coming years. There are very few treatments for the disease

The California Sickle Cell Data Collection Program (SCDC) is a CDC partnership that collects data from a variety of sources, including state agencies and clinical sites that see patients with sickle cell disease. We use these data to understand what challenges people with sickle cell disease are facing in getting care, what health problems they're having, and where they are receiving care.