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.
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.
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.
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!
For our main story in this episode we are joined by Summer 2023 NICHQ Communications & Digital Strategy interns Amalia Hirschhorn-Martinez and Katie McCormick. They speak with members of the NICHQ team about our upcoming webinar focused on infant safe sleep and breastfeeding messaging and NICHQ’s continued work to ensure health professionals and the communities they serve are supported with the necessary tools and resources to create safe sleeping environments and improve breastfeeding and chestfeeding rates.
Continuing Conversations Around Breastfeeding and Safe Sleep Promotion
Join NICHQ for an upcoming webinar “Their stories are so powerful”: Community-based approaches to infant safe sleep and breastfeeding promotion, on Aug. 23. from 2-3:30 PM EST. The webinar will highlight findings from a recent NICHQ-led study titled “Community-Based Approaches to Infant Safe Sleep and Breastfeeding Promotion, a Qualitative Study,” published in BMC Public Health in March.
4 Tips for Including and Engaging Family Partners in Your Work
Patient and family partnerships are an essential element of health equity. By supporting patient and family voices and encouraging space for collaboration, public health professionals can help ensure shared vision and values are at the forefront of determining solutions to improve a community’s health outcomes.
NICHQ Employee Spotlight: Rinka Murakami, Analyst
NICHQ Analyst Rinka Murakami is committed to addressing disparities in maternal and child health, particularly racial disparities. As an Analyst in NICHQ's Department of Applied Research and Evaluation, Rinka is particularly passionate about working on various health initiatives focused on improving birth equity and respectful care.