Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program Model Protocol
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 Regional Collaborative 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), a Model Protocol, and Compendium of Tools and Resources consisting of resources to improve care of people living with sickle cell disease are enclosed.
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. The majority of the recommendations result from a synthesis of changes implemented across the Regional Collaborative Centers in the Sickle Cell Disease Treatment Demonstration Regional Collaborative Program.
NICHQ submit our Report to Congress on September 29, 2021. Funding for this report was provided by the Health Resources and Services Administration.
Read NICHQ's Report to Congress
NICHQ's Report to Congress is now available to download, which includes details of the Program, including data, Regional Coordinating Centers’ activities and recommendations for providers and clinicians.
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.
NICHQ Employee Spotlight: Kelly Edwards, MPH, Senior Project Manager
Kelly Edwards discusses her journey from NICHQ intern to Senior Project Manager, and shares highlights and key takeaways from the six NICHQ projects she's supported.
Children and Their Families Have a Right to Gender-Affirming Healthcare
As physicians, public health professionals, and care providers, we have an obligation to support youth with unique healthcare needs who are at higher risk for negative health outcomes from discrimination, including bullying, physical assault, and suicide. Join us by engaging in meaningful dialogue about best practices for gender diverse kids to improve quality of life, reduce mental health disparities, and most importantly, help the most historically marginalized kids achieve their optimal health.
3 Ways to Close Gaps in Sickle Cell Disease Care: Recommendations from NICHQ Projects
In the past several decades, clinicians, public health professionals, and those with lived experience have seen advancements in Sickle Cell Disease (SCD) treatments and research that have significantly improved outcomes and increased life expectancies for people living with SCD. For example, the FDA-approved medication hydroxyurea (HU) has been recommended as a SCD standard of care due to its ability to help people with SCD mitigate pain and the need for blood transfusions. Preventative measures, such as screening children and adolescents for risk of stroke and ensuring that all people who have SCD receive recommended vaccinations, have also been instrumental in reducing complications associated with SCD. And recently, development of gene therapies has presented possibilities of a new cure. Conversations on how to improve access to care should continue, and these three recommendations begin with some of the most pressing needs.