Sickle Cell Disease Treatment Demonstration Program

The Project

The Sickle Cell Disease Treatment Demonstration Program seeks to improve access to and coordination of care and education for individuals living with sickle cell disease. NICHQ has formed a unique consortium for this program in partnership with the Sickle Cell Disease Association of America and the Boston Medical Center.

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. Through this project, NICHQ will also create a clinical registry for quality improvement for sickle cell disease to be used by grantee network teams across the US to collect data on processes and outcomes of care which will be submitted to the National Coordinating Center. We will convene learning sessions on a bi-annual basis as part of a Hemoglobinopathy Learning Collaborative which will provide an opportunity for our nine grantee network teams to learn from experts and each other and share best practices regarding the management of sickle cell disease. The Hemoglobinopathy 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.

Project Timeline

This grant began in October 2010 and is scheduled to end September 2015. The Hemoglobinopathy Learning Collaborative will run from 2011 - 2013.


Project Goals

  • 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
  • Develop and implement a clinical registry for quality improvement for 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

Status and Milestones

  • Nine grantee sites have been selected to participate in the Sickle Cell Disease Treatment Demonstration Program
  • Established ongoing communications with grantee network teams, including assigning a NICHQ project manager for each team, developing and distributing a monthly project newsletter, updating this website with new materials, and implementing a Listserv for grantee communication
  • Developed an Education Materials Review Protocol, to assist network teams with submitting educational materials regarding sickle cell disease and sickle cell trait for review and approval by HRSA. This protocol will also expand the library of education materials within network teams, by encouraging sharing and dissemination of high-quality education materials
  • Developed a Frequently Asked Questions (FAQ) to address grantee questions focused on data collection, and obtaining Internal Review Board approval for data collection
  • Developed a project evaluation plan.
  • In the process of developing quality improvement measures and data collection plan leading to the full development of the clinical registry to track grantee network improvements
  • Conducted Annual Hemoglobinopathy All Grantee Business Meeting (March 7–8, 2011)
  • Held for Expert panel Meeting (April 11–12, 2011) and the Hemoglobinopathy Quality Improvement Workshop (April 13–14, 2011)
  • Oversight Steering Committee convened in September 2011.
  • Held first learning session of 3rd Hemoglobinopathy Learning Collaborative with 15 grantee teams in Rockville, MD (November 7-8, 2011)

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