Tuesday, May 20, 2025
5/20/2025
NJ Sickle Cell Data Collection Program - Address: 55 N. Willow St. Trenton, NJ 08625-0364 Principal Investigator: Daniel Heitner Phone: 609-913-5482 Email: Daniel.Heitner@doh.nj.gov Total grant program funds requested: $250,000/year To satisfy the goals of the CDC Sickle Cell Data Collection Program (SCDC) funding opportunity, the New Jersey Department of Health Special Child Health Services (SCHS) program will collaborate between the Newborn Screening and Genetics Services Program, the New Jersey Birth Defects Registry, and Special Child Health Services Case Management, all located within SCHS. Organizationally, this will allow for collaboration on identification of newborns and youth with Sickle Cell Disease (SCD). The SCHS program has access to population-based public health data systems to identify additional individuals with SCD and outcomes. In addition, SCHS aims to partner with sickle cell treatment centers and community organizations to strengthen data collection efforts and expand the knowledge of long-term outcomes. The purpose of SCDC is to inform decisions and policies that related to the SCD community, which continues to be impacted by various health disparities. All recipients must implement standardized methods for implementing SCDC, develop strategies for effective communication with stakeholders, and produce materials based on findings. Recipients are expected to establish partner collaborations and explore paths by which the data may be used to inform policies beyond health care, such as transportation, education, housing, or employment, that impact the health of individuals with SCD. This five-year opportunity includes two years of capacity building. Outcomes to be accomplished in the first two years are; Increase d standardization and modernization of methods for SCD surveillance; Increased number of public health work force professionals who have an understanding of SCD surveillance; Increased understanding of the incidence, prevalence, demographics, and healthcare utilization patterns of individuals of SCD; Increased ability to describe the geographic distribution, social determinants of health, and health disparities related to SCD; Increased availability and accessibility of SCD surveillance data to support policies that improve the lives of people with SCD; and Increased availability and accessibility of educational materials to facilitate shared decision making about SCD-related health care. The remaining three years allow for data collection, data analysis, and dissemination of findings. The outcomes to be accomplished in this period are: Increased understanding of the epidemiology of SCD among individuals with SCD, family members and caregivers, health care providers, and policy makers; and Increased utilization of SCD surveillance data to guide prevention and care efforts, monitor SCD health outcomes, develop policy, allocate resources, and plan and implement services, especially those concerning health care, housing, transportation, education, and employment for people with SCD. SCHS will convene a multi-disciplinary team (MDT) to steer the SCDC which will consist of, at minimum, representation from public health, clinical health, mental health, community health, data, health communications, and government relations/policy, as well as one individual with SCD and one who provides care for individual with SCD. The presence of diverse stakeholders connected to the SCD community will help guide the efforts of SCHS in fulfilling the goals of this project. Additionally, the MDT will conduct regular evaluation and continuous quality improvement to improve the SCDC throughout this funding opportunity and ensure that all project goals are met. Currently, SCHS has established partnerships with the Sickle Cell Association of New Jersey, the Cancer Institute of New Jersey located at Rutgers University, and Newark Beth Israel Medical Center for this project and recruited members of each organization to participate as members of the MDT.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).