Sickle Cell Disease Treatment Demonstration Regional Collaboratives 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.
3 Ways to Close Gaps in Sickle Cell Disease Care: Recommendations from NICHQ Projects
In the past several decades, clinicians, public health professionals, and those with lived experience have seen advancements in Sickle Cell Disease (SCD) treatments and research that have significantly improved outcomes and increased life expectancies for people living with SCD. For example, the FDA-approved medication hydroxyurea (HU) has been recommended as a SCD standard of care due to its ability to help people with SCD mitigate pain and the need for blood transfusions. Preventative measures, such as screening children and adolescents for risk of stroke and ensuring that all people who have SCD receive recommended vaccinations, have also been instrumental in reducing complications associated with SCD. And recently, development of gene therapies has presented possibilities of a new cure. Conversations on how to improve access to care should continue, and these three recommendations begin with some of the most pressing needs.
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