
Initiatives
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.

Status: Complete
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.
If you are interested in learning more about this project, email: SCDTDP2014-2017@nichq.org
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 Contact: easowt@wustl.edu |
Midwestern region
Sickle Treatment and Outcomes Research in the Midwest (STORM) TeleECHO Third Thursday of every month; 12 pm - 1 pm ET Contact: christina.bennett@cchmc.org |
Northeast region
Johns Hopkins Sickle Cell ECHO Every Wednesday, 1 pm - 2:15 pm ET Contact: singerge@jhmi.edu; aacheam3@jhmi.edu |
Boston & Rhode Island Pediatric Sickle Cell ECHO First and third Tuesday of every month, 4 pm and 5 pm ET Contact: patricia.kavanagh@bmc.org |
Jacobi Quality Improvement ECHO Every other Thursday, 3 pm ET Contact: lakewr@nychhc.org |
CBO ECHO Candice’s Sickle Cell Fund One Thursday per month, 10 am ET Contact: crystalrivas973@outlook.com |
VCU Sickle Cell ECHO One Wednesday per month, 12:30 pm ET Email: shirley.johnson@vcuhealth.org |
Pacific region
Pacific Sickle Cell Regional Collaborative |
Southeast region
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.