Fostering Better Outcomes for Treating Sickle Cell Disease
Approximately 100,000 Americans live with sickle cell disease (SCD). Those with the inherited blood disorder face a lifelong battle with pain, infection and other serious health problems that can affect every organ in the body. Previously considered a pediatric condition, medical advancements and improvements in care mean children with SCD are now living into adulthood. However, due to an insufficient number of specialized medical centers and trained providers, many with SCD struggle to receive quality healthcare across their lifespan.
NICHQ’s efforts as the National Coordinating Center (NCC) marked the first time in U.S. history that improvements in SCD care were tackled on a large, regional and national scale. This effort launched an innovative approach where each Regional Coordinating Center (RCC)–Heartland, Midwest, Northeast and Pacific—developed regional networks of care and implemented unique strategies to increase provider knowledge around SCD. NICHQ led network-wide measurement activities and coordinated the sharing of best practices for all improvement work. Alongside collecting national data, NICHQ developed common measures for RCCs to compare data captured in state “registries,” ensuring that results could be measured collectively and comparatively.
As a result of the initiatives:
- Four new SCD regional clinics opened in high need areas
- All four regions increasing hydroxyurea use—a treatment therapy—among patients with SCD
- Over 200 providers engaging in telehealth and telementoring sessions
- Nearly 7,000 patients with SCD contributed information to electronic health registries
- Nearly 11,000 patients with SCD received care through SCDTDP regional networks, reflecting a nearly 30 percent increase in those receiving care
- Developed a Compendium of Tools and Materials with promising practices and strategies for improving sickle cell disease support. Find out more.
- Created a model protocol of high-leverage changes that lead to process improvements, for clinicians, nurses, allied health professionals, community-based organizations and public health agencies. Find out more.
Read the full 2017 Congressional Report here.
Results Webinar: Strategies and Next Steps for Improving Sickle Cell Disease
Find out lessons learned and recommendations stemming from this national program focused on improving the quality and access to care for patients with sickle cell disease. Grantees shared their on-the-ground efforts to create systems change and make a difference in the lives of children and adults with sickle cell disease.
Click here for a free webinar recording.
The effort’s success is defined not only by its initial results, but by the enduring impact it will have on the SCD community through the systems it put in place. Thousands more patients with SCD are already receiving quality care and hundreds of providers now have the confidence and skills to provide quality treatment. The resources, clinics, learning centers and networks now available ensure sustained improvement. As the number of knowledgeable providers continues to grow and barriers to care are removed, the amount of SCD patients benefiting from quality, coordinated care will continue to multiply.
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ECHO DINE Quick Facts
Download this helpful flyer for some quick facts about Environmental Influences on Child Health Outcomes: Developmental Impact of NICU Exposures (ECHO DINE) – a research study on the long-term impact of environmental exposures in neonatal intensive care units (NICUs).
Sickle Cell Awareness Month Toolkit
Share these ready-to-use social media graphics and posts in honor of Sickle Cell Awareness Month to continue the conversation about sickle cell disease and sickle cell trait. When posting, use the hashtag #SickleCellMatters2023 and tag @NICHQ so we can like and share your posts!
National Infant Mortality Awareness Month Toolkit
Share these ready-to-use social media graphics and posts in honor of Sickle Cell Awareness Month to continue the conversation about sickle cell disease and sickle cell trait. When posting, use the hashtag #SickleCellMatters22 and tag @NICHQ so we can like and share your posts!
National Infant Mortality Awareness Month Toolkit
In recognition of National Infant Mortality Awareness Month, we’ve put together a collection of social media posts and graphics that can be used to raise awareness about infant mortality and make sure that families are equipped with the tools to live healthier lives. Share these ready-to-use social media graphics and posts to continue the conversation about our nation’s history and its impact on modern-day health outcomes in the Black community.
ASSESSMENT REPORT | Supporting Healthy Start Performance Project 2021 Annual Assessment Report
NICHQ conducted the 2021 Annual Assessment to understand projects' organizational structures, satisfaction with the TASC, programmatic needs, progress toward benchmarks and key objectives, data capacity, and progress towards sustainability. Like the Needs Assessment from 2019 and the 2020 Annual Assessment, this year’s Annual Assessment sought to identify salient programmatic activities for the TASC. In this report, we describe the Annual Assessment’s methods and results, synthesize findings, and describe next steps for the TASC.