Sickle Cell Disease Treatment Demonstration Regional Collaborative Program National Coordinating Center
We work with five regional teams from across the country to improve coordination and service delivery for individuals living with sickle cell disease, enhance access to services, and improve and expand patient and provider education.
September 2018 to September 2021
- Who: The Health Resources and Services Administration launched the Sickle Cell Disease Treatment Demonstration Program more than ten years ago. In this most recent award, NICHQ supports five regional coordinating centers (RCCs) that provide coordinated, comprehensive, culturally competent and family-centered care. Teams are comprised of sickle cell centers, primary care sites, community-based organizations, parents and patients.
- Funder: The project is funded by the Health Resources and Services Administration.
- Our Role: Support all RCCs in developing uniform data definitions and facilitate regular data collection, reporting and analysis. Develop a model protocol that details strategies and lessons-learned for improving sickle cell disease care, deliver a comprehensive report to congress, and establish a compendium of tools and materials that shares promising practices for improving sickle cell disease support.
Interested in Attending an Telehealth Clinic?
Heartland and Southwest region
|Heartland SCD TeleECHO
Clinic time: Third Friday of every month; 11 am - 12 pm CT
|Sickle Treatment and Outcomes Research in the Midwest (STORM) TeleECHO
Third Thursday of every month; 12 pm - 1 pm ET
|Johns Hopkins Sickle Cell ECHO S
Every Wednesday, 1 pm - 2:15 pm ET
Contact: email@example.com; firstname.lastname@example.org
|Boston & Rhode Island Pediatric Sickle Cell ECHO
First and third Tuesday of every month, 4 pm and 5 pm ET
|Jacobi Quality Improvement ECHO
Every other Thursday, 3 pm ET
|CBO ECHO Candice’s Sickle Cell Fund
One Thursday per month, 10 am ET
|VCU Sickle Cell ECHO
One Wednesday per month, 12:30 pm ET
|Education and Mentoring to Bring Access to CarE for SCD (EMBRACE)
First and third Monday of every month; 12 pm -1 pm ET
Recent Legislation that Supports Better Children’s Health Outcomes
In recent months, there has been a surge of legislative actions for children’s health advocates. New laws have been passed that provide funding for programs and research initiatives essential for improving the health and well-being of children and families across the country. Here, NICHQ provides an update on the legislation and brief analysis on the impact on children’s health.
What’s Next for Sickle Cell Disease Improvement? Three Areas That Still Need Our Attention
Right now, close to 100,000 people in the U.S. are battling sickle cell disease (SCD). This means that 100,000 people, many of whom are children, spend days experiencing acute pain, dealing with costly and uncomfortable hospitalizations, and fighting off infections. We can change that. Here are three key areas for targeted improvement.
Start Producing Better Sickle Cell Disease Outcomes in Your Community Today
Explore strategies and examples from communities working to improve care for patients with sickle cell disease (SCD). All results are taken from NICHQ’s recently released congressional report from the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), a national effort that sought to improve the lives of those living SCD.
Creating Better Advocates for Sickle Cell Disease Care
Quality improvement in public health means working through every sector and influence that affects how people live. At the highest level, this includes the rules and laws where people live. Read how Missouri is creating better care for individuals with sickle cell disease by working with the state government to make change.
A Roadmap for Improving Sickle Cell Care in Underserved Areas
Sickle cell disease care is being improved for Indiana's children, and new strategies are helping support better transitions of care.
How One Mom is Raising the Profile of Sickle Cell Disease
Tammy Smith's daughter, Precious, often got sick as a baby and she cried—a lot. "One time she was holding her arm and we thought it was broken, but it wasn’t. Another time she couldn't even sit up. She would just cry and cry. The doctors kept giving us medicine, but it didn't help," recalls Tammy.