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.

To facilitate collaborative development of a newborn bloodspot screening test to detect the genetic lesions that cause spinal muscular atrophy. The test will be designed to use in public health newborn screening laboratories.

To build the framework for collecting data about individuals in the United States with sickle cell disease in order to monitor their health outcomes, evaluate current systems of care, and inform the development of a comprehensive care model to meet the needs of these individuals throughout their life.