Content Development for Newborn Screening Clearinghouse
Develop and maintain educational information on newborn screening for the Health Resources and Services Administration’s Newborn Screening Clearinghouse website. This information will increase awareness about the critical importance of newborn screening among all stakeholders and will help parents and caregivers navigate the screening process.
September 2018 to September 2023
- Who: NICHQ is partnering with Genetic Alliance, a newborn screening content expert and leading national health organization, to develop, revise and deliver general, state-specific and condition-specific newborn screening web page content.
- Funder: The project is funded by the Health Resources and Services Administration.
- Our Role: NICHQ will provide overall project direction and management, including coordinating communications with HRSA, ensuring IT security compliance, and managing and maintaining a strategic workplan that facilitates the creation of timely, relevant and user-friendly web-content.
If you are interested in learning more about this project please email email@example.com.
Eliminating Safe Sleep Fatalities Starts by Identifying What Causes Them
Understanding what causes infant deaths gives states and communities the information they need to identify focused, effective solutions. This makes infant mortality data—data that reveals the causes and contributors to death and system barriers—irreplaceable assets for any infant health improvement effort. And that makes the National Center for Fatality Review and Prevention (National CFRP) an essential partner.
It’s Past Time to Prevent SIDS and Sleep-Related Infant Deaths
In the U.S., Sudden Infant Death Syndrome (SIDS), suffocation and other sleep-related causes claim approximately 3,600 babies every year. That number translates to nearly 165 unfilled kindergarten classrooms. Doing better by American families starts by identifying what’s working and outlining opportunities for improvement. Here, NICHQ Faculty Expert Michael Goodstein, MD, a neonatologist and international safe sleep expert, discusses what priorities should shape improvement efforts in the years to come.
Applying an Equity Lens to Safe Sleep and Breastfeeding Efforts
Black families are twice as likely as white families to have their baby die in the first year of life. In some states, they are three times as likely. These statistics are more than numbers; they represent real families who suffer unimaginable loss—loss that stems from the persistent effects of systemic racism on the health of black families. Here, faculty experts on a national safe sleep and breastfeeding initiative share their recommendations for how health professionals and improvement initiatives can better support the health and well-being of black families.
Promising Practices for Eliminating Disparities in Sleep-Related Infant Deaths
While overall infant mortality rates have gone down during the past decade, black infant mortality rates increased from 2014 to 2015. To address these numbers, individuals, organizations and health departments across the country have designed innovative community programs, grassroots initiatives, state and national campaigns, and educational materials tailored to high-risk and underserved populations that experience barriers to safe sleep practices. Together, their work provides a vital roadmap for others seeking to drive community, state and national change.
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Three Ways Hospitals Can Help Eliminate Sleep-Related Infant Deaths in their State
For the past two years, Tufts Floating Hospital for Children has been working to empower families to follow safe sleep guidelines so that more babies reach year one. Hospitals seeking to help more families adopt safe sleep practices can learn from and replicate the strategies they share.