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.
California's SCDC Program grew out of a need to understand what was happening to those with sickle cell disease in the state. While some people with the disease are seen in high quality, comprehensive care centers (which publish studies on the health of their patients), many people with sickle cell disease do not have access to these centers. They are receiving care in emergency rooms, urgent care centers, and community clinics. It is important to have a picture of health outcomes and healthcare utilization for all people with the disease. California SCDC works to answer questions about sickle cell disease in the whole population, and then works with collaborators to make the answers to those questions useful and widely available to people who can use the information.
This work began in a previous project, the Registry and Surveillance System for Hemoglobinopathies in 2010. This project set the stage for all of our rare disease surveillance work. California SCDC began in 2015; our primary task is to gather and link data from hospitals, healthcare clinics, newborn screening, and vital records. We then analyze that data to provide information to stakeholders who can use it to direct research, change clinical practice, get new grant funding to improve care, change policy, develop new treatments, or just better understand the disease and the experience of the people who live with it. We put this information out in academic publications, fact sheets, web-based information, presentations, social media, and videos.
Our other important work for this program is to inform as many people about sickle cell disease and its impacts as we can. We have quarterly webinars on a variety of subjects having to do with sickle cell disease ? these are open to anyone to participate, click the link to get on the email list. Past webinars are here. We also maintain an active Facebook page.
The CDC Foundation provides funds for this work, and they are funded for this project in California and Georgia by Pfizer, Inc., Sanofi, Global Blood Therapeutics and the Doris Duke Charitable Foundation.