Sickle Cell Disease Treatment Demonstration Program
We work with four regional teams from across the country to increase the number of providers treating persons for sickle cell disease or sickle cell related issues, increase the number of providers prescribing disease modifying therapies, such as hydroxyurea, and increase the number of patients receiving regular care from providers knowledgeable about treating sickle cell disease.
September 2014 to September 2018
- Who: Four regional grantee teams that cover diverse HRSA-designated regions across the country. Partnerships include sickle cell treatment centers, federally qualified health centers, community based organizations, parents and patients.
- Funder: The project is funded by the Health Resources and Services Administration.
- Our Role: Gather data from and evaluate the performance of SCDTDP grantees in addressing the goals of the program. Deliver a comprehensive report to congress that outlines results of the project, develop a model protocol that outlines strategies for improving sickle cell care, and establish a compendium of tools and materials developed by teams.
Results Webinar: Strategies and Next Steps for Improving Sickle Cell Disease
Find out lessons learned and recommendations stemming from this national program focused on improving the quality and access to care for patients with sickle cell disease. Grantees shared their on-the-ground efforts to create systems change and make a difference in the lives of children and adults with sickle cell disease.
Click here for a free webinar recording.
The items were created for regional coordinating centers to use to talk about their involvement in the project and the project's impact:
Impact Statement: This flyer provides a high-level look at the SCDTDP and its impact nationwide.
Congressional Report Executive Summary: This standalone executive summary highlights what can be found in the full Congressional Report.
ECHO flyer: This flyer shares information about the use of Project ECHO to expand the number of providers able to treat patients with sickle cell disease.
Sickle Cell Disease Treatment Demonstration Program 2017 Model Protocol
The purpose of this 2017 model protocol is to provide clinicians, nurses, allied health professionals, community-based organizations and public health agencies with recommendations and strategies to improve care provided to individuals with sickle cell disease and trait.
Sickle Cell Disease Treatment Demonstration Program Compendium of Tools and Materials
This compendium identifies promising practices and strategies used by participants in the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) to implement changes in their health systems related to improving access to care, increasing use of hydroxyurea and provider education.
Sickle Cell Disease Treatment Demonstration Program 2017 Congressional Report
The Sickle Cell Disease Treatment Demonstration Program 2017 Congressional Report details the many activities, outcomes, lessons learned and recommendations stemming from this work.
Sickle Cell Disease Treatment Demonstration Program 2014 Congressional Report
This report to Congress synthesizes the results and recommendations of four years of the Sickle Cell Disease Treatment Demonstration Program (one part of NICHQ's Working to Improve Sickle Cell Healthcare project).
Sickle Cell Disease Treatment Demonstration Program 2014 Model Protocol
The purpose of this model protocol is to provide clinicians, nurses, allied health professionals, community-based organizations and public health agencies with recommendations and strategies to improve care provided to individuals with sickle cell disease and trait.
Sickle Cell Pain in the Emergency Department: A Guide to Improving Care
This implementation guide was developed for healthcare providers who care for individuals with sickle cell disease in hematology programs and acute care settings such as the emergency departments and day hospitals. It provides insights and lessons learned from multidisciplinary teams across the country that have succeeded in improving the management of pain episodes in emergency departments or day hospitals for both pediatric and adult patients.
What’s Next for Sickle Cell Disease Improvement? Three Areas That Still Need Our Attention
Right now, close to 100,000 people in the U.S. are battling sickle cell disease (SCD). This means that 100,000 people, many of whom are children, spend days experiencing acute pain, dealing with costly and uncomfortable hospitalizations, and fighting off infections. We can change that. Here are three key areas for targeted improvement.
Start Producing Better Sickle Cell Disease Outcomes in Your Community Today
Explore strategies and examples from communities working to improve care for patients with sickle cell disease (SCD). All results are taken from NICHQ’s recently released congressional report from the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), a national effort that sought to improve the lives of those living SCD.
Creating Better Advocates for Sickle Cell Disease Care
Quality improvement in public health means working through every sector and influence that affects how people live. At the highest level, this includes the rules and laws where people live. Read how Missouri is creating better care for individuals with sickle cell disease by working with the state government to make change.
A Roadmap for Improving Sickle Cell Care in Underserved Areas
Sickle cell disease care is being improved for Indiana's children, and new strategies are helping support better transitions of care.
How One Mom is Raising the Profile of Sickle Cell Disease
Tammy Smith's daughter, Precious, often got sick as a baby and she cried—a lot. "One time she was holding her arm and we thought it was broken, but it wasn’t. Another time she couldn't even sit up. She would just cry and cry. The doctors kept giving us medicine, but it didn't help," recalls Tammy.
Sickle Cell Pain Protocol Reduces Wait Times for Meds and Eases Patient Frustration
When kids with sickle cell disease come to an emergency room (ER) asking for painkillers, the care can sometimes be less than ideal. In a busy ER, there can be long wait times, and, especially with an illness like sickle cell disease that has no visual signs of pain, doctors sometimes question whether a patient is really in a medical crisis or just drug seeking.