Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Compendium of Tools and Resources

Sickle Cell Disease (SCD), an inherited blood disorder that is more prevalent in individuals of African and Latinx/Hispanic descent, affects approximately 100,000 Americans. People living with SCD experience acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body, requiring providers who are knowledgeable and understanding.

The Health Resources and Services Administration launched the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program more than ten years ago. As we push to enhance access to services for people living with Sickle Cell Disease and improve and expand provider and patient education, NICHQ worked with five regional teams from across the country to deliver a comprehensive report to Congress detailing outcomes from the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP), a Model Protocol, and Compendium of Tools and Resources consisting of resources to improve care of people living with sickle cell disease are enclosed.

This compendium identifies promising practices and strategies used by participants in the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program (SCDTDRCP) to implement changes in their health systems related to improving access to care, increasing use of hydroxyurea and provider education.

NICHQ submit our Report to Congress on September 29, 2021. Funding for this report was provided by the Health Resources and Services Administration.

2017-2021 SCDTDRCP Report to Congress Cover

Download the Report

Read NICHQ's Report to Congress

NICHQ's Report to Congress is now available to download, which includes details of the Program, including data, Regional Coordinating Centers’ activities and recommendations for providers and clinicians.

Related Resources

Preparing Children with Special Healthcare Needs for Transition of Care

Transitioning from pediatric to adult care can be challenging for any young person, but those challenges are often amplified for children with special healthcare needs. Two young adults with complex medical conditions share their experience with transitioning from pediatric to adult care.

NICHQ Employee Spotlight: Nathaniel Ray Pickett, Ph.D.

Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Web & Product Manager Nathanial Ray Pickett, Ph.D., shares his untraditional path to working in MCH, while highlighting his passion for equity, resisting oppression, and giving voice to the voiceless.

TRANSCRIPT | Connecting Infant and Maternal Health Outcomes – Prematurity Awareness Month

Our main story this episode highlights he links between maternal and infant health, and the impacts of preterm birth on health outcomes for mothers, birthing people, and babies. Hear from NICHQ VP of Equity and Innovation Dr. Stacy Scott, Ph.D. D, MPA, who shares some equity considerations regarding disparate rates of preterm birth, infant mortality, and maternal mortality. Dr. Zsakeba Henderson, MD, FACOG, NICHQ’s senior health advisor, also connects the impact of maternal health on infant health outcomes while shining a light on the U.S. maternal mortality crisis and current policy initiatives that can help reverse maternal mortality trends.

NICHQ Employee Spotlight: Callie Rowland

Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Project Manager Callie Rowland, MPH, shares her passion for working to affect change in the system, serving all mothers and children, and working for an organization that aims to help create more equitable systems.

NICHQ Employee Spotlight: Madeline D'Onfro

Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Project Manager Madeline D'Onfro, MPH, shares her passion for creating systems that protect members of society who are marginalized the most and improving experiences for those with the highest needs.

4 Strategies for Transitioning from Pediatric to Adult Care for People Living with Sickle Cell Disease

Whether transitioning to college or a full-time job, it's a time when young adults are going to be establishing their independence from their nuclear family and taking responsibility for their own needs. For a young person with special healthcare needs such as SCD, the responsibilities are compounded by the additional need to begin transitioning from pediatric to adult care. Read more for four helpful strategies for transitioning from pediatric to adult care for people living with sickle cell disease and other special health conditions.