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news.The CDC Foundation is partnering with the US Centers for Disease Control and Prevention's (CDC) Division of Blood Disorders within the National Center on Birth Defects and Developmental Disabilities, the California Rare Disease Surveillance Program and Pfizer to collect, analyze and disseminate sickle cell information.
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Sickle cell disease (SCD), which is the most common inherited blood disorder in the US, is estimated to affect nearly 100,000 people and the estimated cost of care is about $1.1bn per year. Compared to people without the disease, people with the most severe form of SCD have a 20-30 year shorter life expectancy.
The program will be initiated in California, implementing population based public health surveillance of the about 7,000 state residents living with sickle cell disease.
Data from the system will provide states, health care provider networks, and pharmaceutical and insurance companies with the information needed to establish cost-effective practices to help improve and potentially extend the lives of these people.
CDC National Center on Birth Defects and Developmental Disabilities director Coleen Boyle said: "There is a long-recognized need for a system that is able to collect, analyze, and disseminate information about the clinical history of individuals living with sickle cell disease.
"The data collected will facilitate treatment decision making and will help lead to real health improvements for people with sickle cell disease."
The longitudinal data collection system will be the first system of its kind for SCD in the US and will have the capacity to include information on every individual diagnosed with this disease in the country.
Data will come from a combination of sources such as newborn screening, administrative data sets, medical charts, and may include personal interviews.