mother and baby at pediatrician

Initiatives

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.

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Status: Active

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
Session dates, registration and recordings are available on their website: here.
contact: svora@c3dibd.org

Southeast region

Education and Mentoring to Bring Access to CarE for SCD (EMBRACE)

EMBRACE Atrium Health/Duke SCD ECHO Clinic
Second and fourth Monday of each month, 12:30 to 1:30 PM
Contact: Tiffany.Mackey@atriumhealth.org

EMBRACE University of Alabama SCD ECHO 
Second and fourth Tuesday from 4 - 5 PM CT (adult focused for second Tuesday, and pediatric focused for fourth Tuesday)
contact: smoderhack@uabmc.edu