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Webinar Updates:

Thank you for your interest in the Webinar on Leveraging Data to Address Sickle Cell Disease. If you were not able to attend today’s Webinar - or if you would like to review any of the information we reviewed at the Webinar - please use the below links to view them:

Public Webinar: Leveraging Data to Address Sickle Cell Disease:

Private Webinar: Leveraging Data to Address Sickle Cell Disease (1:00- 1:30pm)
Password: SCData2020


Leveraging data to address Sickle Cell Disease

Posted by Jason Hairston (Admin) Jun 23, 2020

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. According to the U.S. Department of Health and Human Services (HHS), there are over 100,000 Americans living with SCD. The disease is most common among people of African ancestry, with about 1 in 12 African Americans carrying the gene. 

While awareness and understanding of SCD has increased in recent years, there is still much more we need to know. There is a nationwide demand for population-level SCD surveillance data to address the needs of the sickle cell community. The federal government is taking steps to raise awareness and improve data collection for the disease.

Defeating SCD will need to begin with data – data for understanding the disease, for addressing it through the healthcare system, and for developing better, sustainable treatments.

Based on these needs, the HHS Office of the Chief Technology Officer has partnered with the nonprofit Center for Open Data Enterprise (CODE) and &Partners to identify high-value datasets and potential interventions to improve care for patients with Sickle Cell Disease.

This post was edited on Jun 23, 2020 by Alex Wilson

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