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 Learning Session?
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
Every Wednesday, 1 pm - 2:15 pm ET
Contact: firstname.lastname@example.org; email@example.com
|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)
EMBRACE Atrium Health/Duke SCD ECHO Clinic
EMBRACE University of Alabama SCD ECHO
Sickle Cell Disease Training And Mentoring Program
The Health Resources and Services Administration is collaborating with the HHS Office of the Assistant Secretary for Health to deliver a new SCD Project ECHO series for primary care providers. This series, taught by hematologists using a case study-based, tele-mentoring approach, will cover basics of SCD care, such as pain management, hydroxyurea, and preventive services.
You can view the training schedule and sign up for an SCD teleECHO clinic here. Participating primary care providers will also be eligible to request on-demand consultative services from hematologists to further support SCD care and mentoring.
Four Solutions for Sickle Cell Disease Support
Precious Lee has spent her lifetime navigating the health system, first as a patient with SCD and then, after her son Melvin was born with SCD, as a mother. She has lived with the impact of SCD, witnessed significant advancements in care, and intimately knows the barriers families still face. Here, she describes those challenges and elaborates on opportunities for continued improvement.
Rare Diseases Deserve Our Attention
Between 25 and 30 million Americans, many of them children, are living with a rare disease. The complex challenges facing these children and families deserve attention and demand innovative responses. Here, NICHQ President and CEO Scott D. Berns, MD, MPH, shares his experiences, elaborates on successful strategies, and describes his goals for the future.
Improving Transitions in Care Saves Lives
Advancements in care have helped more children with rare diseases reach adulthood, but health systems and providers have struggled to help children transition to adult care, resulting in high rates of complications and mortality for young adults. These strategies for helping young adults with sickle cell disease transition to adult care can save lives.
An Innovation in Provider Training Increases Access to Care for Sickle Cell Disease Patients
An internationally recognized telementoring initiative is transforming provider training to enhance care delivery and improve access to care and quality of life for SCD patients across the country.
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.