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.
Rare Disease Day Social Media Toolkit
Use this social media toolkit with infographics, images and sample posts sharing key statistics and facts that illustrate the impact rare diseases have on over 25 million Americans. Share the toolkit with your colleagues and use it yourself on Rare Disease Day on Feb. 29, 2020
Implicit Bias Resource Guide
Recognizing and addressing biases is a critical step towards eliminating health disparities and achieving health equity. In this brief, you’ll find three resources to support your work to address your own implicit biases: seven steps we can all take to minimize implicit bias; A Q&A with health experts about how to recognize and address implicit bias; and a selection of stories shared with NICHQ about the many ways bias has affected individuals.
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.
Four Solutions for Sickle Cell Disease Support
Precious Lee has spent her lifetime navigating the health system, first as a patient with SCD and then, after her son Melvin was born with SCD, as a mother. She has lived with the impact of SCD, witnessed significant advancements in care, and intimately knows the barriers families still face. Here, she describes those challenges and elaborates on opportunities for continued improvement.
Rare Diseases Deserve Our Attention
Between 25 and 30 million Americans, many of them children, are living with a rare disease. The complex challenges facing these children and families deserve attention and demand innovative responses. Here, NICHQ President and CEO Scott D. Berns, MD, MPH, shares his experiences, elaborates on successful strategies, and describes his goals for the future.
Improving Transitions in Care Saves Lives
Advancements in care have helped more children with rare diseases reach adulthood, but health systems and providers have struggled to help children transition to adult care, resulting in high rates of complications and mortality for young adults. These strategies for helping young adults with sickle cell disease transition to adult care can save lives.
An Innovation in Provider Training Increases Access to Care for Sickle Cell Disease Patients
An internationally recognized telementoring initiative is transforming provider training to enhance care delivery and improve access to care and quality of life for SCD patients across the country.
Recent Legislation that Supports Better Children’s Health Outcomes
In recent months, there has been a surge of legislative actions for children’s health advocates. New laws have been passed that provide funding for programs and research initiatives essential for improving the health and well-being of children and families across the country. Here, NICHQ provides an update on the legislation and brief analysis on the impact on children’s health.
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.