Initiatives

Working to Improve Sickle Cell Healthcare (WISCH)

Two programs—the Sickle Cell Disease Newborn Screening Program (SCDNBSP) and the Sickle Cell Disease Treatment Demonstration Program (SCDTDP)—aimed at improving screening and follow-up for those who have tested positive for sickle cell disease and trait, and improving care across the lifespan.

Status: Complete

SCDNBSP: June 2011 to May 2015. SCDTDP: September 2010 to September 2014.

Who: The SCDNBSP involved six teams comprised of federally qualified community health centers and other primary care sites, comprehensive sickle cell treatment centers and community-based organizations. The SCDTDP consisted of nine teams comprised of community centers, doctors, sickle cell departments, emergency room coordinators, parents and patients.
Funder: The project was funded by HRSA and in partnership with the Boston Medical Center and the Sickle Cell Disease Association of America.
Our Role: Facilitated a Breakthrough Series learning collaborative to apply quality improvement methodology to sickle cell disease care and education in a variety of settings. Led the development of expert-reviewed quality measures for sickle cell disease (e.g. acute care measures). We also served as the National Coordinating Center for SCDTDP and the National Coordinating and Evaluation Center for SCDNBSP. In these roles, we collected, monitored and distributed best practice data and findings, identified protocols for the treatment of sickle cell disease and related complications, and identified and disseminated educational materials related to sickle cell disease.

Resources

Quality Improvement Courses

Our Quality Improvement (QI) courses have helped thousands of people start their journeys in improvement science. These courses teach the fundamentals of quality improvement (QI); how to use this methodology to create effective, beneficial change; and give direction on how to test improvement ideas and increase their impact and effectiveness.

We are currently in the process of re-developing these courses to provide a new, expanded, and even more interactive experience. Please use the form below to be notified with updates.

ECHO DINE Quick Facts

Download this helpful flyer for some quick facts about Environmental Influences on Child Health Outcomes: Developmental Impact of NICU Exposures (ECHO DINE) – a research study on the long-term impact of environmental exposures in neonatal intensive care units (NICUs).

Sickle Cell Awareness Month Toolkit

Share these ready-to-use social media graphics and posts in honor of Sickle Cell Awareness Month to continue the conversation about sickle cell disease and sickle cell trait. When posting, use the hashtag #SickleCellMatters2023 and tag @NICHQ so we can like and share your posts!

National Infant Mortality Awareness Month Toolkit

Share these ready-to-use social media graphics and posts in honor of Sickle Cell Awareness Month to continue the conversation about sickle cell disease and sickle cell trait. When posting, use the hashtag #SickleCellMatters22 and tag @NICHQ so we can like and share your posts!

National Infant Mortality Awareness Month Toolkit

In recognition of National Infant Mortality Awareness Month, we’ve put together a collection of social media posts and graphics that can be used to raise awareness about infant mortality and make sure that families are equipped with the tools to live healthier lives. Share these ready-to-use social media graphics and posts to continue the conversation about our nation’s history and its impact on modern-day health outcomes in the Black community.

ASSESSMENT REPORT | Supporting Healthy Start Performance Project 2021 Annual Assessment Report

NICHQ conducted the 2021 Annual Assessment to understand projects' organizational structures, satisfaction with the TASC, programmatic needs, progress toward benchmarks and key objectives, data capacity, and progress towards sustainability. Like the Needs Assessment from 2019 and the 2020 Annual Assessment, this year’s Annual Assessment sought to identify salient programmatic activities for the TASC. In this report, we describe the Annual Assessment’s methods and results, synthesize findings, and describe next steps for the TASC.

Insights

Preparing Children with Special Healthcare Needs for Transition of Care

Transitioning from pediatric to adult care can be challenging for any young person, but those challenges are often amplified for children with special healthcare needs. Two young adults with complex medical conditions share their experience with transitioning from pediatric to adult care.

NICHQ Employee Spotlight: Nathaniel Ray Pickett, Ph.D.

Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Web & Product Manager Nathanial Ray Pickett, Ph.D., shares his untraditional path to working in MCH, while highlighting his passion for equity, resisting oppression, and giving voice to the voiceless.

TRANSCRIPT | Connecting Infant and Maternal Health Outcomes – Prematurity Awareness Month

Our main story this episode highlights he links between maternal and infant health, and the impacts of preterm birth on health outcomes for mothers, birthing people, and babies. Hear from NICHQ VP of Equity and Innovation Dr. Stacy Scott, Ph.D. D, MPA, who shares some equity considerations regarding disparate rates of preterm birth, infant mortality, and maternal mortality. Dr. Zsakeba Henderson, MD, FACOG, NICHQ’s senior health advisor, also connects the impact of maternal health on infant health outcomes while shining a light on the U.S. maternal mortality crisis and current policy initiatives that can help reverse maternal mortality trends.

NICHQ Employee Spotlight: Callie Rowland

Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. This month, NICHQ Project Manager Callie Rowland, MPH, shares her passion for working to affect change in the system, serving all mothers and children, and working for an organization that aims to help create more equitable systems.

4 Strategies for Transitioning from Pediatric to Adult Care for People Living with Sickle Cell Disease

Whether transitioning to college or a full-time job, it's a time when young adults are going to be establishing their independence from their nuclear family and taking responsibility for their own needs. For a young person with special healthcare needs such as SCD, the responsibilities are compounded by the additional need to begin transitioning from pediatric to adult care. Read more for four helpful strategies for transitioning from pediatric to adult care for people living with sickle cell disease and other special health conditions.

TRANSCRIPT | Sickle Cell Awareness Month: Transitioning to College, Equity Considerations, and Resource Sharing

Our main story this episode highlights the need for resources for people living with sickle cell disease and strategies for transitioning from pediatric to adult care. We also reflect on National Infant Mortality Awareness Month and hear from NICHQ team member about connecting their personal and professional passion for equity. Thanks for joining us!