Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Report to Congress
Sickle Cell Disease (SCD), an inherited blood disorder that is more prevalent in individuals of African and Latinx/Hispanic descent, affects approximately 100,000 Americans. People living with SCD experience acute pain crises, dangerous infections, and other serious health problems that can damage every organ in the body, requiring providers who are knowledgeable and understanding.
The Health Resources and Services Administration launched the Sickle Cell Disease Treatment Demonstration Program more than ten years ago. As we push to enhance access to services for people living with Sickle Cell Disease and improve and expand provider and patient education, NICHQ worked with five regional teams from across the country to deliver a comprehensive report to Congress detailing outcomes from the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP).
The 2017-2021 SCDTDRCP addressed clinical and psychosocial needs to improve the health and quality of life of people with sickle cell disease. The Regional Coordinating Centers conducted numerous regional activities in Program priority areas. These activities, along with the Program recommendations, will inform and enhance future efforts to provide quality care for people living with this complex condition.
Serving as the 2017-2021 National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP), NICHQ was pleased to submit a Report to Congress, with details of the Program, including data, Regional Coordinating Centers’ activities, and recommendations for providers.
NICHQ submit our Report to Congress on September 29, 2021. Funding for this report was provided by the Health Resources and Services Administration.
Additional Tools and Resources
Supporting Indigenous Families for Improved Health Outcomes
Indigenous mothers and birthing people, fathers, partners, caregivers, and families, can speak for themselves. So, make sure seats are available – and filled – on your projects, your teams, your boards. Many projects within the MCH field have steering committees, and all should have family representation. As I hope you’ve intuited, it’s not enough to carry a message. When I think about justice, equity, diversity, and inclusion with regard to our committees, our faculty experts, or even in our improvement advisors, I have begun to ask the question: Are there people from American Indian and Alaska Native communities here?
Top NICHQ Resources for Pursuing Change in 2022
Browse a collection of NICHQ articles, webinars, and resources that your community found most valuable in 2022.
Look for NICHQ at 2022 American Public Health Association Annual Meeting
Join the National Institute for Children's Health Quality (NICHQ) on Nov. 6 at 2 p.m. for The Ever-Evolving Path to Equity in Children’s Health, a panel highlighting the evolution of NICHQ's equity work at the 2022 American Public Health Association Annual Meeting.
NICHQ Collaboration featured in White House Efforts to Improve Substance Use Disorder in Pregnancy
With an emphasis on the need for collaborative efforts among hospitals, outpatient clinics, and local communities, the White House Office of National Drug Control Policy (ONDCP)'s recent report, Substance Use Disorder in Pregnancy: Improving Outcomes for Families, details the ways in which state perinatal collaboratives have been exceptionally effective in improving outcomes for pregnant women and infants such as by reducing risk of bloodstream infections and early term deliveries. From 2017-2022, Centers for Disease Control and Prevention’s Division of Reproductive Health funded 13 state perinatal quality collaboratives (PQCs) and the National Institute for Children’s Health Quality (NICHQ) as the coordinating center for PQCs.
NAPPSS-IIN Hosting Community of Practice Meetings to address policies and Share Experiences about Safe Sleep and Breastfeeding
The NICHQ National Action Partnership to Promote Safe Sleep Improvement and Innovation Network (NAPPSS-IIN) project will continue to convene six Community of Practice (CoP) groups from September 2022 – March 2023. CoPs include Birthing Professionals, Community Advocacy Organizations, Community-Based Home Visitors, Early Childcare Providers, First Responders, and Researchers. Each group will convene twice to continue to address policies, improve skills, and learn from each other’s experiences in the areas of safe sleep and breastfeeding.