September is National Sickle Cell Awareness Month


WISCH (Working to Improve Sickle Cell Healthcare) is part of NICHQ’s portfolio of projects focused on improving the quality of care for individuals with sickle cell disease (SCD) across the lifespan. These projects include the Sickle Cell Disease Newborn Screening Program and the Sickle Cell Disease Treatment Demonstration Program, both of which are funded through the Health Resources and Services Administration (HRSA).

NICHQ is working with 15 grantee sites to improve systems of detection and care for people living with SCD. Teams made up of healthcare providers, patients, hematologists, nurses and others are using quality improvement techniques to implement:

  • Timely acute care management
  • Better coordination of care
  • Better transition from pediatric to adult care
  • Improved screening, counseling, and education for individuals with sickle cell disease and trait
  • Enhanced education for providers on treating, assessing and monitoring sickle cell disease

Improving Care for People with Sickle Cell Disease [Video]

Video Summary: Providers throughout the country discuss strategies for overcoming obstacles of sickle cell disease. Through NICHQ's Working to Improve Sickle Cell Healthcare (WISCH) project, teams are using quality improvement methods to address these changes.

Sickle Cell Disease Treatment Demonstration Program

This program aims to establish an interdisciplinary approach to treating and preventing complications from sickle cell disease, improve patients’ ability to manage their care, enable a smooth transition from pediatric care to adult care and educate providers on SCD and treatment options.

Sickle Cell Disease Newborn Screening Program

This program aims to improve follow-up and treatment of those who are detected through newborn screening to have sickle cell disease, sickle cell trait and other hemoglobin disorders.

NICHQ, along with the Sickle Cell Disease Association of America and the Boston Medical Center, serves as the National Coordinating Center for these projects. The National Coordinating Center assists the regional grantee network teams in quality improvement methods by coordinating, monitoring, and distributing data and best practices across the teams.

Status and Milestones

Hemoglobinopathy Learning Collaborative (HLC):
The HLC is the primary vehicle used by WISCH to coordinate the sickle cell programs and encourage shared learning across teams. Since November 2011, the HLC has met four times. This includes the first workshop which focused on quality improvement.

Expert Meetings:
Expert panels are convened by NICHQ to determine the improvement and measurement strategies for new projects.

Data and Measurement:
For the first time, grantee teams are using quality of care indicators to monitor their progress in improving care people with SCD throughout the lifespan.

  • A client survey data training was held July 19, 2012 on instruments that will collect data on health status, and health services utilization that received approval from the Office of Budget and Management (OMB) in May 2012.
  • The Quality Improvement measures for the Sickle Cell Disease Treatment Demonstration Program received approval from OMB in March 2013.

Oversight Steering Committee (OSC):
The OSC provides guidance to the WISCH project. Members include past and current grantees, individuals with sickle cell disease, and national experts in sickle cell disease, primary care, and health science. The OSC meets quarterly and has met five times since September 2011.


  • Access free materials from the CDC about sickle cell disease, including state-specific factsheets from the  Registry and Surveillance System for Hemoglobinopathies (RuSH) pilot project.
  • Read an article where faculty of the Johns Hopkins Berman Institute of Bioethics share personal and professional experiences at the 40th Annual Sickle Cell Disease Association convention in Baltimore, and beyond.
  • Read a journal article about NICHQ's Hemoglobinopathy Learning Collaborative, published in the Journal of Health Care for the Poor and Underserved. Note: The full text of this article is being shared with the permission of Meharry Medical College and the Journal of Health Care for the Poor and Underserved (JHCPU).
  • Read a story about how the Tennessee WISCH team is working to provide accessible and affordable care to adult sickle patients who have stopped seeking primary care support because they do not have insurance.
  • Read a story about how providers at the Boston Medical Center have slashed in half the time it takes to deliver pain medications to sickle cell patients in their pediatric emergency department.
  • Read a policy brief about the Sickle Cell Treatment Act of 2003. 
  • Watch a webinar where Dr. Lanetta Jordan, a WISCH faculty member and Chief Medical Officer of the Sickle Cell Disease Association of America, Inc., provides an overview of the provisions and opportunities for advocacy in the Sickle Cell Treatment Act of 2003.

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