News

NICHQ Selected to Manage Content for National Newborn Screening Website

Nov. 7, 2018

BOSTON– By identifying disorders at birth and providing immediate intervention, newborn screening has saved countless lives. A new comprehensive web-based clearinghouse will help families and health professionals nationwide access the information and resources needed to increase their knowledge about newborn screening. NICHQ is proud to announce that it has been selected by the Health Resources and Services Administration (HRSA) to manage all content for this essential online resource.

Approximately four million babies are screened every year, making newborn screening one of the most successful public health programs. Yet despite this prevalence, many families are unaware of the different types of screenings that exist and how they vary by state, the conditions for which their baby is being screened, and what follow up and additional testing may be needed, depending on the screening’s results.

“This gap in knowledge is often magnified among underserved populations and states with limited resources,” says NICHQ President and CEO Scott. D. Berns, MD, MPH, FAAP. “By providing relevant and accessible online content, we can make it easier for all families to navigate the screening process, and ultimately help address national infant health disparities.”

In partnership with content experts of the Expecting Health team at Genetic Alliance, NICHQ will facilitate the development of up-to-date and state-specific web-content about newborn screening—its life-saving potential, how it is conducted, and the conditions screened in each state. All content will be hosted on the HRSA-managed clearinghouse website, a coordinated, centralized source of information for families and stakeholders across the country.

“NICHQ will leverage its significant experience leading newborn screening improvement projects, managing large scale projects, and developing user-friendly website platforms,” says NICHQ Associate Director of Programs, Kim Sprunck, MSW, MPH, who will direct the project. “Together with HRSA and Genetic Alliance, we will ensure that families can find and easily understand all the information and resources needed to increase national awareness about newborn screening.”