2022 Recipient

Illinois Sound Beginnings

As true partners, the Illinois Early Hearing Detection and Intervention Services (EHDI) and Illinois Guide By Your Side (GBYS) staff work very closely to develop grant narratives, budgets, project methodology, work plans, and data measures. By having activities family-focused, this allows the Program to address the screening and follow-up needs of all infants and their families in Illinois while reducing diagnostic loss to follow-up and increasing early intervention and parent-to-parent support enrollment. 

2021 Recipients

ScreenPlus

ScreenPlus is a consented, multi-disorder, multi-sponsored pilot newborn screening program. Implemented in partnership with the New York State Newborn Screening (NBS) Program, ScreenPlus aims to screen over 100,000 babies from diverse populations for an initial panel of 14 rare, treatable disorders in addition to the those already on the routine NBS panel. Parents who give birth at eight pilot hospitals in NY are invited to enroll their newborns in ScreenPlus at no cost, using no extra blood. ScreenPlus uses an analyte-first, multi-tiered screening platform to improve accuracy. Babies identified with ScreenPlus disorders will be followed over time, providing critical data about the natural history of pre-symptomatic disease. Additionally, we are using our ScreenPlus infrastructure to perform mixed-methods studies focused on the ethical, legal, and social implications associated with screening newborns for complex disorders. Through these studies, we will engage thousands of parents whose opinions will generate critical, objective data to guide the future expansion of NBS in an ethically sound manner.

Connecticut Newborn Screening Network

The Connecticut Newborn Screening Network (the Network) responds to all newborn screens with an out-of-range result. The Network plays a critical role in reducing the time it takes for infants to receive a diagnosis, connects families with specialty healthcare providers, and ensures ongoing care into adulthood. The Network collaborates closely with specialized healthcare teams and families to streamline workflows, coordinate care, and provide education, support, and long-term follow-up.

The Connecticut Newborn Screening Family Advisory Group offers recommendations on matters affecting patients and their families in the newborn screening process. The Family Advisory Group provides valuable input based on the needs identified by families who have experienced newborn screening, which enhances the overall quality of care and patient experience. The Family Advisory Group has helped to improve processes, education, and communication statewide. Ultimately, the Network seeks input from our Family Advisory Group to enhance the developmental, social-emotional, and physical health outcomes of individuals identified with newborn screening conditions by fostering a collaborative and family-focused approach to care.

Questions? Comments? Contact Dr. Eboni Drummond.