Biogen Joins Partnership with CDC Foundation to Develop Longitudinal Data Collection System for Sickle Cell Disease

Sickle cell disease, estimated to affect nearly 100,000 Americans, is the most common inherited blood disorder in the United States. The estimated cost of care for people with sickle cell disease is approximately $1.1 billion dollars annually. The CDC Foundation announced a new partnership in 2015 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 and other partners to support the development and operation of a longitudinal data collection system for Americans with sickle cell disease. Biogen is joining this partnership to help address this health problem. Data from the system will provide states, healthcare 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.

“Understanding the clinical history of individuals living with sickle cell disease continues to be of great importance,” said Coleen Boyle, Ph.D., M.S.Hyg., director of CDC’s National Center on Birth Defects and Developmental Disabilities.  “The recent partnership fostered between Biogen and the CDC Foundation will further enable critical support for the collection and study of information leading to advances in sickle cell disease treatment.”  

Other organizations participating in the partnership include the California Rare Disease Surveillance Program and Pfizer Inc. Although this initial stage of the project will be developed in California, 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 (for example, hospital discharge, emergency department, and state Medicaid data), medical charts, and may include personal interviews. The information gathered through this system will allow for a better understanding of medical and educational interventions for sickle cell disease, as well as improved patient outcomes over time. The goals of the program are to ensure better care for individuals with sickle cell disease and better data for healthcare providers.

“We are grateful to Biogen for joining this important partnership,” said Dr. Judith Monroe, president and CEO of the CDC Foundation. “This longitudinal data collection system will be the first system of its kind for sickle cell disease in the United States.”  

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

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