Project Description Narrative:
More than 26 million Americans are affected by rare genetic disorders, collectively incurring annual healthcare costs that surpass those of heart disease and cancer. Infants are particularly vulnerable to these disorders, as they are the leading cause of death in this population. In Wisconsin alone, about 2,000 infants are born each year with a rare genetic disorder or birth defect, comprising 20-30% of patients in level IV Neonatal Intensive Care Units (NICUs). These infants typically require longer hospital stays, have higher acuity, and face a lifetime of medical challenges compared to other patients.
Molecular diagnosis is fundamental to understanding these disorders, their prognoses, and treatment options, as well as implications for family members. Evidence shows that diagnostic speed is critical in the NICU. For instance, decreasing time to a diagnosis from day-of-life 14 to day-of-life three increased the number of NICU cases where genomic results changed management by approximately 50%, while cost savings per infant sequenced averaged $6,300. Currently, access to genetic testing and particularly advanced diagnostic technology is very uneven. Genomic testing is ordered on a case-by-case basis and often only after a consult by a geneticist. The subspecialty of medical genetics has long been a small, subspecialized field with Wisconsin having only 10-15 geneticists to serve all the people affected with genetic conditions including the estimated 2000 neonates per year. Importantly, geneticists are mainly located in the two major academic centers in Wisconsin, American Family Children’s Hospital (AFCH) and Children’s of Wisconsin (CW).
Therefore, genomic testing is rarely ordered for babies in community and regional hospitals due to a lack of genetic services. To overcome this fundamental inequity, this project’s researchers have assembled a multidisciplinary team of UW Madison and Medical College of Wisconsin faculty who will create a new state-wide Baby Badger Network. This network is modeled after the California Medicaid-supported Baby Bear network and Michigan’s Baby Deer project. The Baby Badger network is a hub and spoke model designed to make genetic services and genomic testing accessible to babies in nurseries across Wisconsin, not just NICUs located at the major academic centers. The result will be better health care for all. Baby Badger will address the needs of a vulnerable population by equipping the workforce with the right knowledge, at the right place, at the right time, while simultaneously building a community of practice.
The pilot project aims to integrate two community hospitals into the already existing collaboration between CW’s and AFCH’s genetics professionals and neonatologists to establish a streamlined and efficient workflow. Concurrently, the project team will undertake a comprehensive program evaluation. This empirical evidence will then pave the way for the widespread expansion of the Baby Badger Network to encompass every NICU in Wisconsin. These preliminary data will also be used to strengthen parallel strategies to sustain the program: securing additional grant funding, advocating for reimbursement of this genetic testing by insurers, and working with the state department of health to make this a state-funded program similar to newborn screening. The successful implementation of this project will lessen healthcare disparities and improve the lives of critically ill children throughout Wisconsin and beyond.