Biogen Joins Partnership with CDC Foundation to Develop Longitudinal Data Collection System for Sickle Cell Disease
Effort with CDC to collect, analyze and share much-needed sickle cell information
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 (langel@cdcfoundation.org).
Claire Greenwell, 404.443.1126, cgreenwell@cdcfoundation.org
About the CDC Foundation
The CDC Foundation advances the mission of the Centers for Disease Control and Prevention through philanthropy and public-private partnerships that protect the health, safety and security of America and the world. Established by Congress more than two decades ago, the CDC Foundation is an independent, nonprofit organization that has launched 800 programs and raised more than $620 million through partnerships with philanthropies, corporations, organizations and individuals. The CDC Foundation currently manages nearly 300 CDC-led programs in the United States and in 75 countries. For more information, please visit www.cdcfoundation.org.
About Biogen
Through cutting-edge science and medicine, Biogen discovers, develops and delivers worldwide innovative therapies for people living with serious neurological, autoimmune and rare diseases. Founded in 1978, Biogen is one of the world’s oldest independent biotechnology companies and patients worldwide benefit from its leading multiple sclerosis and innovative hemophilia therapies. For more information, please visit www.biogen.com. Follow Biogen on Twitter.
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