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.
NICHQ, the 2017-2021 National Coordinating Center for the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program (SCDTDRCP), 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 Resources and Tools
In addition to NICHQ's Report to Congress, the project also produced additional resources and tools for providers, including:
NICHQ Employee Spotlight: Kim Sprunck
As NICHQ's Associate Director of Programs and Project Director for the Sickle Cell Disease Treatment Demonstration Regional Collaboratives Program and Content Development for Newborn Screening Clearinghouse initiatives, Kim Sprunk shares key takeaways and findings from the projects and their importance to NICHQ's overall programming goals.
Navigating Well-Child Visits and Vaccinations during COVID-19
Well-child visits and recommended vaccinations are essential, ensuring children stay healthy and are protected from preventable diseases and illnesses such as measles, whooping cough, and seasonal flu. But, as the COVID-19 pandemic persists, data shows that fewer childhood vaccinations have been given and many children have fallen behind on their scheduled appointments. Healthcare professionals should utilize the following strategies to work with parents and caregivers to get their children caught up on missed appointments and recommended vaccinations.
Exploring a Nonbinary Approach to Health
NICHQ is not abandoning the traditional use of the terms “mother” and “maternal.” We are embracing the inclusive language of “birthing person/people” across our work. A move toward inclusive language does not force us to stop using language that so many people identify with; at its core, inclusion is about creating more space for one another. We are taking care to expand the use of these terms in our communications, on our website, in our resources, and eventually, in all our projects.
NICHQ Employee Spotlight: Stacey C. Penny
With NICHQ's Rare As One Network Workstream Facilitation Initiative at a halfway point, Senior Project Director Stacey C. Penny, MSW, MPH shares an inside look at one of NICHQ's most collaborative projects.
Are Screens Making our Children’s Eyes Worse?
Even before the COVID-19 pandemic, children of all ages were spending more screen time than ever before on cellphones, tablets, and laptops. Prolonged periods of time staring at a screen that may be too big, too bright, or too close to our eyes can cause eye fatigue or even lead to dry eye, a chronic eye condition common in older adults. With eye conditions becoming more prominent in children, it's important for health professionals to encourage healthy screen viewing habits and support children’s eye health in the digital age.
Qualitative Data Analysis: 7 Things You Need to Know to Get It Right
Qualitative analysis is important because the rich detail shared by individuals is extremely powerful in thinking through complex systems and can illustrate how the implementation of our programs and policies are working in real life and ultimately lead to change. NICHQ shares seven tips for gathering qualitative data and making the most out of your analysis.