CDC Foundation, Pfizer and CDC Partner to Develop Longitudinal Data Collection System for Sickle Cell Disease

Sickle cell disease (SCD), estimated to affect nearly 100,000 Americans, is the most common inherited blood disorder in the United States and the estimated cost of care for sickle cell disease is approximately $1.1 billion dollars annually. To address this health burden, the CDC Foundation is partnering with the U.S. 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 (a project of the Public Health Institute, located in Oakland, CA) and Pfizer Inc. to support the development and implementation of a longitudinal data collection system for Americans with sickle cell disease. The program will begin in California, implementing population based public health surveillance of the approximately 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 people with sickle cell disease.

“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,” said Coleen Boyle, Ph.D., M.S. hyg., director of CDC’s National Center on Birth Defects and Developmental Disabilities. “The data collected will facilitate treatment decision making and will help lead to real health improvements for people with sickle cell disease.”

People with the most severe form of sickle cell disease have a 20-30 year shorter life expectancy than people without the disease. Major complications of SCD include anemia, debilitating pain, infection, stroke, and organ damage. The poor health outcomes may be the result of limited or no access to comprehensive care, especially during their adult years, and limited treatment options. 

The longitudinal data collection system will be the first system of its kind for sickle cell disease in the United States. Although this initial stage of the project will be developed with a single state, the system will have the capacity to include information on every individual diagnosed with sickle cell disease in the United States. Data will come from a combination of sources including newborn screening, administrative data sets, medical charts, and may include personal interviews. The information gathered through this sustainable data collection system will allow for a better understanding of medical and educational interventions as well as patient outcomes over time. 

“We are grateful to Pfizer for supporting this important database system for sickle cell disease,” said Charles Stokes, president and CEO of the CDC Foundation. “We encourage others to support this endeavor, as accurate data collection is at the heart of understanding sickle cell disease needs and trends in the United States. The CDC Foundation is proud to be a part of this important, life-saving partnership.”  

To learn more about how to support this effort, please contact Laura Angel at the CDC Foundation (