Resources
Publications
Improving Health Care Transition for Young Patients With Sickle Cell Disease Through Quality Network
In this quality improvement study of 458 pediatric patients with sickle cell disease, 5 hematology centers successfully implemented health care transition programs.
Access this publicationBlog
Enhanced Support During and After Transition from Pediatric to Adult Care Needed for People Living with Sickle Cell Disease
Strategies for providers to improve the experience of care for young people living with SCD and enhance the process of transition from pediatric to adult care include educating pediatric patients early about the process of transitioning to adult care, streamlining systems for sharing medical records, and considering bias when making pain management recommendations. Learn more about each strategy, and read insights from Mikeia Green, a fourth-year medical student at UC Davis, who has successfully transitioned from pediatric to adult SCD care.
Read this blog postNews
Abt, NICHQ Partner With HRSA to Ensure Improvements to Sickle Cell Care Under $9.6M Contract
Rockville, Md. – Sickle Cell Disease (SCD) is an inherited blood condition affecting approximately 100,000 individuals in the United States. A disproportionate number of people living with sickle cell disease are Black and Hispanic individuals. Furthermore, SCD also affects a growing number of individuals of African, Caribbean, Central/South American, East Indian, Middle Eastern, Mediterranean and…
Read this news articleDownloadable Content
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Compendium of Tools and Materials
Promising practices and strategies for improving sickle cell disease support.
Download this resourceDownloadable Content
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Model Protocol
This Model Protocol provides strategies to improve care provided to individuals with SCD and trait.
Download this resourceDownloadable Content
Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Report to Congress
A comprehensive report to Congress detailing the program outcomes and findings of SCDTDRCP.
Download this resourceBlog
NICHQ Employee Spotlight: Kim Sprunck
Full name and title: Kim Sprunck, MSW, MPH, Associate Director of Programs Years with NICHQ: 3 How has your background/experiences led you to join a national children’s health organization? “I have a long history of being interested in public health, and specifically population health. Specifically, I have a background in improving health for vulnerable populations- including helping low-income populations who need…
Read this blog postDownloadable Content
Sickle Cell Disease Infographic for Patients and Caregivers
This infographic suggests some steps to find solutions and help make getting to SCD appointments easier.
Download this resourceDownloadable Content
Improving Sickle Cell Disease Patient/Provider Relationships and Increasing Appointment Attendance
Guides to improve relationships between providers and people living with SCD.
Download this resourceBlog
Continuing Sickle Cell Disease Care During the COVID-19 Pandemic
Right now, close to 100,000 people in the United States, many of whom are children, spend days experiencing acute pain, dealing with costly and uncomfortable hospitalizations, and fighting off infections – all common side effects associated with sickle cell disease (SCD). Thanks to innovative advancements in care and treatment, most people living with SCD now…
Read this blog post