At a glance
- Supporting state and local initiatives is crucial to advancing sickle cell disease care and management across the United States.
- States funded by ÐÇ¿ÕÓéÀÖ¹ÙÍø to participate in the Sickle Cell Data Collection program have achieved significant milestones. Examples include increasing access to specialized health care, informing legislation, and engaging the community.
Background
ÐÇ¿ÕÓéÀÖ¹ÙÍø funds states to participate in the Sickle Cell Data Collection (SÐÇ¿ÕÓéÀÖ¹ÙÍø) program. Each SÐÇ¿ÕÓéÀÖ¹ÙÍø state collects and links data from several sources to develop a comprehensive health database. The data helps to better understand the healthcare needs of people living with sickle cell disease (SCD) in their state.
Another part of the SÐÇ¿ÕÓéÀÖ¹ÙÍø program is engaging with the community to ensure that collected data are relevant and beneficial for those living with SCD. Read the stories below to learn how SÐÇ¿ÕÓéÀÖ¹ÙÍø data has helped to advance the care of and support for people with SCD.
Alabama (AL)
Increasing Support and Services for the Sickle Cell Community
AL SÐÇ¿ÕÓéÀÖ¹ÙÍø data showed a marked increase in the number of individuals with SCD identified in the state. In response to this information, they teamed with community-based organizations to conduct awareness campaigns and events to improve support and services for the Alabama SCD community.
Story coming soon...
California (CA)
Expanding Network of Adult SCD Clinics
CA SÐÇ¿ÕÓéÀÖ¹ÙÍø partnered with the California Sickle Cell Disease Foundation and the Center for Inherited Blood Disorders to improve SCD care in the state. This collaboration secured funding to establish a network of 12 adult SCD clinics through the Networking for California Sickle Cell Care initiative. This effort, informed by data from CA SÐÇ¿ÕÓéÀÖ¹ÙÍø, led to reduced emergency department visits and hospitalizations, changing the landscape of SCD care in the state.
Colorado (CO)
Informing Legislation for Outreach and Support Services for SCD
Using data from CO SÐÇ¿ÕÓéÀÖ¹ÙÍø, the Colorado Sickle Cell Association helped inform the passage of , which sets aside state funds for an outreach program to deliver support services to people with SCD in Colorado. The new law aims to improve access to critical resources for individuals living with SCD and their families.
Georgia (GA)
Improving Access to SCD Care
GA SÐÇ¿ÕÓéÀÖ¹ÙÍø provided data that showed where people with SCD live in Georgia and maps of distance to SCD specialty care; this assisted the Sickle Cell Foundation of Georgia (SCFG) in identifying underserved areas. SCFG used the data and developed a training program to educate non-specialty providers in SCD care to bridge this gap. Since 2018, 600 non-specialty providers in Georgia have received a 4-hour training program to better understand how to provide care for individuals with SCD.
Indiana (IN)
Informing Policy to Secure Funding for SCD Care
IN SÐÇ¿ÕÓéÀÖ¹ÙÍø used their data to create infographics to share with lawmakers and members of the public during the state’s Sickle Cell Advocacy Day. These infographics showed where people with SCD live in Indiana and other demographics such as age and race. The easy-to-understand infographics were important for educating 150 lawmakers who were unfamiliar with SCD. By providing clear, localized data, IN SÐÇ¿ÕÓéÀÖ¹ÙÍø informed key decisions that led to the passage of legislation that increased resources for SCD care in Indiana.
Michigan (MI)
Enhancing the Type of Data Collected by SÐÇ¿ÕÓéÀÖ¹ÙÍø
MI SÐÇ¿ÕÓéÀÖ¹ÙÍø added Health Status Assessments into their SÐÇ¿ÕÓéÀÖ¹ÙÍø program to include patient-reported data on healthcare experiences and outcomes. This addition to their data collection efforts provides a deeper understanding of the health needs and challenges faced by people with SCD. The information collected will be used to help inform healthcare practices and policies in Michigan.
North Carolina (NC)
Connecting Newborns to SCD Resources
NC SÐÇ¿ÕÓéÀÖ¹ÙÍø, together with Piedmont Health Services and Sickle Cell Agency, the North Carolina Division of Public Health, and individuals living with SCD, used its data to inform the development of region-specific infographics. These were designed to connect newborns with SCD and their families to local resources. The materials provided vital information that may help to improve health outcomes for families of children with SCD.
Tennessee (TN)
Training Future Public Health Leaders
TN SÐÇ¿ÕÓéÀÖ¹ÙÍø involved several graduate students in their public health surveillance program. The students obtained hands-on experience as data analysts as well as mentorship from faculty and community partners involved with the SÐÇ¿ÕÓéÀÖ¹ÙÍø program. This training has been instrumental in preparing the next generation of public health professionals in Tennessee, enhancing their knowledge and skills in SCD research and community engagement.
Story coming soon...
Wisconsin (WI)
Enhancing Public Awareness of SCD Through Data
Prior to the start of the WI SÐÇ¿ÕÓéÀÖ¹ÙÍø program, there was a lack of information about the SCD population living in Wisconsin. To address this, WI SÐÇ¿ÕÓéÀÖ¹ÙÍø used program data to develop infographics showing where people with SCD live in the state and demographics such as age and race. These widely viewed resources have increased public awareness of SCD in Wisconsin and have fostered collaboration among multiple institutions across the state to increase their reach and visibility.