National Center on Birth Defects and Developmental Disabilities

SICKLE CELL DATA COLLECTION (SCDC) PROGRAM UPDATES

September 18, 2019

Communications Updates

SCDC’s policy memo, Understanding Sickle Cell Disease: CDC’s Role in Surveillance, Education, and Awareness, demonstrates how new and timely national data can allow for better understanding of and improved health outcomes for SCD: https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc-understanding-sickle-cell-disease.html

California SCDC’s Annual Data Reports for years 2005 and 2010–2016 are available online: https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc-state-data/california.html

Communications Updates

The Spring issue of The Bloodline (SCDC program’s quarterly newsletter) is available online: https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc-newsletter.html

CDC shared resources on World Sickle Cell Day (June 19) for nurses to help improve the health of patients with SCD including the publication, “Understanding the Complications of Sickle Cell Disease:” https://www.cdc.gov/features/sickle-cell-awareness/index.html

CDC will share educational materials on transition & back-to-school, diversity among the sickle cell disease (SCD) community, transfusions, and SCD surveillance during September Sickle Cell Awareness Month. For more updates on these resources, follow us on Twitter at @CDC_NCBDDD.

Additional SCD Resources

Podcast: Sickle Cell Disease - Give Blood, Save a Life https://tools.cdc.gov/medialibrary/index.aspx#/media/id/401587

New Personal Stories about Caregivers of individuals with SCD:– Rae Blaylark– Shantá Robertson– Lance Jasper Joneshttps://www.cdc.gov/ncbddd/sicklecell/stories.html

DD19-1906: Capacity Building for Sickle Cell Disease Surveillance:

This project supports the provision of technical assistance to guide the building of capacity for implementing state wide, population-based SCD surveillance. The tools and materials created by funding recipients, in collaboration with CDC, will allow for increased SCD-related partnership building within and among all recipients and standardization of methods for SCD surveillance. This will result in an expanded number of states with the fundamentals to participate in the Sickle Cell Data Collection (SCDC) program and the capacity to contribute in a meaningful way to the elimination of health disparities associated with SCD.

Technical Assistance:– Public Health Institute (CA)– Georgia State University, University Foundation, Inc. (GA)

Capacity Building:– The University of Alabama at Birmingham (AL)– Indiana Hemophilia and Thrombosis Center (IN)– Michigan Department of Health and Human Services (MI)– Minnesota Department of Health (MN)– Duke University (NC)– University of Tennessee Health Science Center (TN)– Virginia Department of Health (VA)

DD19-1906: Recipients:

The Sickle Cell Data Collection program’s data reports for Georgiaand California are now available online. They include 2010 – 2015 data on patient demographics, hospitalizations, and emergency department visits for SCD. https://www.cdc.gov/ncbddd/hemoglobinopathies/index.html

SCDC program data reports

Recent Georgia Products

Sickle Cell Data Collection Brochure– Georgia Sickle Cell Data Collection

Program overview.

Sickle Cell Data Collection Brief: Births in Georgia, 2004-2016

– Brief focusing on the number of new cases of SCD identified between 2004 and 2016 through the state’s newborn screening program.

Recent Georgia Products

Multisite Transfusions for Sickle Cell Disease: Journal article and data brief

– Using data from the SCDC Program, characterized the use of intermittent transfusions for SCD patients in emergency departments and inpatient hospitals in Georgia from 2007 to 2016.