Sickle Cell Disease Treatment Demonstration Program

At a Glance

What: A collaborative quality improvement project to establish an interdisciplinary approach to treating sickle cell disease and enable a smooth transition for patients from pediatric care to adult care.

Why: Sickle cell disease is chronic, but life spans of individuals can be significantly extended with the proper treatment and care.

Who: Nine teams comprised of community centers, doctors, sickle cell departments, emergency room coordinators, parents and patients.

When: This project began in October 2010 and is scheduled to end in September 2014. The learning collaborative will run from 2011 to 2014.

Funders: This project is supported by a contract from HRSA.


Sickle cell disease can cause individuals intense periods of pain known as “crisis.” Patients who go into emergency departments during a crisis often encounter long wait times to pain medication. Aside from causing suffering, the delay in treatment can lead to hospitalization. Streamlining and coordinating care as well as promoting greater understanding of SCD in the provider community, and with patients and parents, can help raise the quality of life for patients. (Read more on sickle cell disease here.)

Project Overview

Through the Sickle Cell Disease Treatment Demonstration Program, NICHQ has partnered with the Sickle Cell Disease Association of America and the Boston Medical Center to improve care and outcomes for individuals with sickle cell disease.

As the National Coordinating Center for this project, NICHQ collects, monitors and distributes best practice data and findings, identifies protocols for the treatment of sickle cell disease and related complications, and identifies and disseminates educational materials related to sickle cell disease.

The project also includes a learning collaborative, in which teams (in partnership with the Sickle Cell Disease Newborn Screening Program) convene to learn from experts and each other and share best practices regarding the management of sickle cell disease. The learning collaborative offers consumers, health care providers, and community-based organizations the first nationwide opportunity to apply quality improvement strategies to the care of individuals with sickle cell disease across the United States.

Goals and Activities

  • Demonstrate improvements in care and outcomes for those with sickle cell disease within the regional grantee networks
  • Establish effective models for specialty-primary care integration and transition of care for individuals with sickle cell disease
  • Identify model protocols for treatment of sickle cell disease and related complications
  • Establish a plan for widespread dissemination and uptake of best practice approaches for sickle cell care

Additional Resources



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