The grant abstract summary information shown below was originally provided by the applicant. However, HRSA has edited it to remove any phone numbers and email addresses that were included. The summary you see is from the most recent submission.
Project Name: State Newborn Screening System Priorities Program (H4N)
Applicant Title: HEALTH, NEW JERSEY DEPARTMENT OF
Abstract Text: Address: 55 N. Willow St. Trenton, NJ 08608-1203, Project Director: Suzanne Canuso, Contact Phone Number: xxx-xxx-xxxx, Email: xxxxxxxxxxxxxx@xxx.xx, Total grant program funds requested: $345,000/year To fully address the scope of the HRSA State Newborn Screening System Priorities Program (NBS Propel) funding opportunity, the Newborn Screening (NBS) Program for the State of New Jersey (NJ), which includes the NBS Laboratory, in the NJ Public Health and Environmental Laboratories (PHEL), and the Newborn Screening and Genetics Services Program, in Special Child Health Services (SCHS), are collaborating. The grant has two focus areas: one to support lab operations to improve timeliness of specimen collection, testing, and results reporting, and the other to support improvements in Short-Term (STFU) and Long-Term Follow Up (LTFU). To address focus area one, the NBS Lab is requesting grant funding to support the implementation of software to improve lab processes. The software will allow the NBS Lab to interface with hospital electronic health records (EHRs) and for hospitals to interface with the NSB Lab via electronic messaging. The dual exchange of electronic messaging will allow the NBS Lab to ensure that all babies born in NJ receive bloodspot screening as this software allows for tracking and reconciliation with birth records and enables accounting for unusual circumstances such as screening refusals, reduces errors related to manual data entry, as all demographic information is submitted to the lab electronically, improves hospital and NBS Lab staff efficiency by eliminating the manual entry of patient information, and optimizes the timeliness of reporting NBS results, as results are transmitted directly into a patient’s EHR, mitigating delays experienced related to printing and mailing reports. Key to building this infrastructure is ensuring confidentiality and integrity of data through encryption. To address focus area two of improving STFU through LTFU and helping families understand and navigate the process from confirmation of diagnosis to treatment, and through follow-up across the lifespan, the Newborn Screening and Genetics Services Program is requesting funding to support the development and implementation of a newborn screening LTFU program. The NBS STFU program registers children confirmed as having a diagnosis on the NJ newborn screening panel with the NJ Birth Defects Registry. By way of registration, children are referred to the county case management office in which they live. A case manager (nurse or social worker) outreaches to the family to offer free, voluntary help related to caring for their child. There are approximately 240 children referred to case management via NBS STFU each year. The NBS program will enhance this system of outreach to create a comprehensive system of LTFU. The LTFU program will work in tandem with the STFU program, however, it needs to be developed as its own program with discrete goals and staff. With implementation of a LTFU program, NBS will be able to collect comprehensive, standardized information on each child to better understand utilization of healthcare services, especially related to chronic disease management and condition specific treatment, the met and unmet needs of children/families, and quality of life metrics. Data will be used to create descriptive epidemiology to inform policies and procedures, provide continuous quality improvement to the NBS program overall, and inform age-appropriate care throughout the lifespan. The purpose of the proposed grant initiatives is to enhance NJ’s NBS program to provide more timely reporting and expanded follow-up services for newborns and children with, or at risk for, heritable disorders to help them achieve optimal health and wellness. These activities are targeted to serve all children born in NJ and their families, and are designed to improve health equity, access to care, and family well-being.