Purpose
Mission: To improve quality of life, life expectancy, and health among people living with sickle cell disease (SCD).
New Funding Awards for SCDC
CDC hosted a reverse site visit at its Roybal Campus in Atlanta in November 2023. There were more than 60 participants from all 16 SCDC states.
Sixteen new awards were funded through CDC-RFA-DD-23-0002, “Sickle Cell Data Collection (SCDC) Program.” The 5-year project period began on September 30, 2023.
The recipients are as follows:
- CDC shared resources on the SCDC program in observance of World Sickle Cell Day.
- SCDC California released the infographic "Living without essential healthcare."
- SCDC California developed the infographic "How can we better support people with sickle cell disease?" in collaboration with Sickle Cell Anemia Awareness San Francisco and Cayenne Wellness Center.
- SCDC Michigan developed the brief "Michigan Sickle Cell Data Collection program CDC site visit."
- SCDC North Carolina launched its program website: https://sites.duke.edu/ncscdc/. The website includes an overview of the NC SCDC program, surveillance findings, a data request form, and resources for the SCD community.
- SCDC Tennessee released its inaugural newsletter on May 31. It will be published quarterly with data updates and partner activities. Email Amanda Young at ajyoung@memphis.edu to receive a copy and to be added to the subscriber list.
- SCDC Wisconsin has released the infographic "Newborn screening for sickle cell disease in Wisconsin."
CDC hosted a reverse site visit at its Roybal Campus in Atlanta in November 2023. There were more than 60 participants from all 16 SCDC states.
Communications corner
- CA SCDC developed infographics that highlight the rationale behind the program's data collection, the impact the program has had since 2010, and a call for the SCD community in the state to get involved.
- CA SCDC hosted a webinar What's New for the Sickle Cell Data Collection Program on March 28. The team shared program updates and activities for the coming year, as well as updated data on the CA population. They were joined by new SCDC partners in Texas. The TX SCDC team shared updates on program implementation, as well as activities for the coming year. Recordings of the CA SCDC-hosted webinars can be found here.
- MI SCDC developed a new brief for Michiganders in collaboration with Sickle Cell Disease Association of America (SCDAA) MI Chapter detailing SCD in Michigan.
- NC SCDC, in partnership with individuals affected by SCD and Piedmont Health Services and Sickle Cell Agency, created infographics for people living with SCD in the state.
- NC SCDC program had its first advisory council meeting for 2024 on March 27. Piedmont Health Services and Sickle Cell Agency hosted the meeting during their monthly client-centered activity 'Zoomin N2 You.' The meeting created an opportunity for NC SCDC to directly engage with the SCD community, share updates on the NC SCDC program, and seek input on program activities and priorities for the SCD community in NC.
In the community
- A Sickle Cell Advocacy Day was held February 12 in Indianapolis. More than 150 people attended to increase awareness of the challenges with SCD treatment. Multiple media sources used IN SCDC data to support their stories about the event. IN SCDC team members Lisa Hoffman and Lena Harvey are featured in this article.
- MI SCDC is providing analytic support to the Sickle Cell Expansion and Enhancement program, following the issuance of two new grant awards by the Michigan Department of Health and Human Services to the Children's Hospital of Michigan and Bronson Methodist Hospital. These grants aim to expand and improve access to care for Michiganders impacted by SCD.
- MTS Sickle Cell Foundation and GA SCDC partnered with the Georgia Public Library Service (GPLS) to launch a sickle cell awareness initiative. GA public libraries will have the opportunity to submit proposals on how they plan to raise awareness about SCD and sickle cell trait (SCT) through their libraries.
Recent publications
- Case Ascertainment of Sickle Cell Disease Using Surveillance or Single Administrative Database Case Definitions
- Characteristics of Emergency Department Visits Made by Individuals with Sickle Cell Disease in the U.S., 1999–2020
- COVID-19 Immunization Coverage Among People with Sickle Cell Disease
- Improving the Lives of People with Sickle Cell Disease: Community Organizations and Epidemiologists Working Together
- Increasing Visibility of Sickle Cell Disease in Indiana: Establishing Baseline Prevalence Using Integrated Data from Multiple Sources
- National Quality Indicators in Pediatric Sickle Cell Anemia
- Opioid Use After First Opioid Prescription in Children with Sickle Cell Disease
- Telehealth Use Before and During the COVID-19 Pandemic Among Children with Sickle Cell Anemia.
- Timeliness of Opioid Administration for Pain in the Emergency Department for Adults with Sickle Cell Disease
Up-to-data
CA SCDC analyzed SCDC data for the Networking California for Sickle Cell Care Initiative to describe the patient population and their outcomes before and after the opening of the MLK Outpatient SCD clinic in Los Angeles and the UCSD Hillcrest Clinic in San Diego.
CO SCDC used SCDC data to inform the development of Colorado Senate Bill SB 24-042, which was introduced to the state's Senate Health & Human Services Committee on February 1, 2024. The bill proposes to create the Arie P. Taylor SCD outreach program within the Colorado Department of Public Health and Environment and contract with a community-based organization to offer counseling, health advice, help in finding community services, as well as support for individuals and families affected by SCD.
GA SCDC provided
- Information about the number of adults with SCD living in the southern counties of this state to help Augusta University (recipients of Recruitment and Engagement in Care to Impact Practice Enhancement for Sickle Cell Disease grant) find and engage with individuals with SCD who are not already connected with health care.
- Information about acute care utilization (emergency department and in-patient) for individuals with SCD to a doctoral student at the University of Alabama studying access to clean drinking water and its impact on health and quality of life for individuals with SCD.
- Data about the number of individuals living with SCD in the state to help the GA Department of Community Health assess the trend of SCD prevalence in the state during the past 5 years.
Presentations
Between June and December 2023, SCDC states delivered presentations at 8 different conferences.
Sickle Cell Disease Association of America (SCDAA) Annual Conference 2023
- “Acute Care Changes Pre/Post Prescription Drug Monitoring Program (PDMP) in Georgia” (Blake McGee, GA SCDC)
- “Communication Efforts of Sickle Cell Disease Data Collection Program in Wisconsin” at SCDAA Annual Conference (Jessica J. Rico, WI SCDC)
- “Engaging Stakeholders and a Team of Multi-Disciplinary Researchers to Set Future Directions for Sickle Cell Disease Pain Management in Georgia” (Sangeetha Lakshmanan, GA SCDC)
Council of State and Territorial Epidemiologists (CSTE) Annual Conference 2023
- “Characterizing Mortality Among Individuals with Sickle Cell Disease in Michigan, 1997 through 2020” (Pooja Patel, MI SCDC)
- “Epidemiology of Sickle Cell Disease in Michigan, 2018” (Krista Latta, MI SCDC)
- “State-University Partnership to Implement Public Health Surveillance for Sickle Cell Disease in Michigan” (Michaella Baker, MI SCDC)
Academy Health Annual Research Meeting (ARM) 2023
- “Identifying Hydroxyurea Utilization Patterns Among People Living with Sickle Cell” (Melinda Rushing, MI SCDC)
- “Examining Community-Level Social Vulnerability and Emergency Department Use for People with Sickle Cell Disease in Michigan” (Jennylee Swallow; MI SCDC)
- “Immunization Adherence among Children with Sickle Cell Disease: Results from a Population-based Study” (Scarlette Shi, GA SCDC)
- “Sickle Cell Data Collection Program: Leveraging Multi-Source Data for Policy” (Sarah Reeves, MI SCDC)
- “Use of Telehealth for Individuals with Sickle Cell Disease during the COVID-19 Pandemic” at Academy Health ARM (Missy Plegue, MI SCDC)
65th American Society of Hematology (ASH) Annual Meeting
- “Patterns of Emergency Department Utilization of Adolescents and Young Adults Living with SCD in North Carolina” (Samuel Wilson, NC SCDC)
- “Sickle Cell Disease Births and Social Vulnerability (2016–2020): A Report from the Sickle Cell Data Collection Program” (Mariam Kayle, NC SCDC)
National Heart, Lung, and Blood Institute (NHLBI) Annual Sickle Cell Disease Research Meeting 2023
- “Pregnancy and Disease-Related Morbidity Among Medicaid Enrollees with Sickle Cell Disease” (Mariam Kayle, NC SCDC)
American Academy of Nursing Health Policy Conference 2023
- “The Nurse-Led Model of Care: Data-Centered, Community-Partnered Interventions to Address Health Inequities” (Mariam Kayle, SCDC)
2023 Colorado Sickle Cell Virtual Summit
- “Colorado Sickle Cell Data Collection Project” (Joshua Miller, CO SCDC)
11th Annual Duke SCD Virtual Conference
- “Learning about People with Sickle Cell Disease in North Carolina: Sickle Cell Data Collection Program” (Mariam Kayle, NC SCDC)
Contact
For any questions about the SCDC program, contact Mary Hulihan or Mandip Kaur.
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