NEWS | June 18, 2020

Project Baby Bear shows genomic sequencing for infants in intensive care yields life-changing benefits and medical cost savings

State funded Medi-Cal pilot completed at UC Davis Children’s Hospital and four other Children’s Hospitals statewide

(SACRAMENTO)

In a pilot program funded by the State of California, Project Baby Bear demonstrated that a rapid precision medicine program for critically ill babies enrolled in Medi-Cal produced better health outcomes and reduced suffering for the infants while decreasing the cost of their care. UC Davis Children’s Hospital was one of five participating hospitals statewide in the pilot program. The pilot program was started at Rady Children’s Hospital-San Diego.

Michael Villarreal is a UC Davis patient who was served by Project Baby Bear.  Michael Villarreal is a UC Davis patient who was served by Project Baby Bear.

Using the most comprehensive genomic test available – rapid Whole Genome Sequencing (rWGS) – Project Baby Bear analyzed the genetic code of 178 infants to provide doctors and families with vital diagnostic information that empowered them to make life-altering medical decisions resulting in shorter hospital stays, fewer invasive procedures and targeted personalized care.

Project Baby Bear helped doctors identify the exact cause of rare, genetic diseases in an average of three days, instead of the four to six weeks standard genetic testing offers. This allowed physicians to deliver timely treatment tailored to the baby’s specific condition.  

Project Baby Bear was funded by the State of California as a $2-million Medi-Cal pilot aimed at examining the benefits of using rWGS to help improve outcomes for infants hospitalized in intensive care with undiagnosed illness and whether the use of this technology would be cost effective.

“Project Baby Bear allowed us to provide accurate diagnosis in more than a third of the tested seriously ill neonates and infants, and, it impacted their management. The essence of this genome project was the clinical acumen and collaboration of the entire patient care team combined with the comprehensiveness of the genetic test and the speed with which results were turned around allowing diagnoses of diseases that are ‘one in a million’ to be made," said Suma Shankar, director of the UC Davis Precision Genomics Clinic and co-lead of the UC Davis site for Project Baby Bear.

Patient blood samples were sent to Rady Children's Institute for Genomic Medicine for sequencing and interpretation from the California Children’s Services accredited regional neonatal and pediatric intensive care units at UC Davis Children’s Hospital, UC San Francisco Benioff Children’s Hospital Oakland, Valley Children’s Hospital, CHOC Children’s Hospital and Rady Children’s Hospital-San Diego.

The UC Davis Precision Genomics Clinic already uses whole genome sequencing for children with undiagnosed, often congenital, conditions to find the underlying genetic causes and improve their care. 

"Genetic disorders are common in the population and that is why the California state newborn screening program is so critical to screen for genetic disorders early in one’s life. However, there are over 20,000 genes in our genome, thus only a handful of disorders are screened in the newborns period. Rapid whole genome sequencing is not science fiction or experimental – Project Baby Bear has demonstrated that rapid sequencing in newborns save lives and is actually cost effective, and has shown how next generation sequencing has revolutionized the process of making complex diagnoses in pediatric medicine in a matter of days,” said Katherine Rauen, chief of genomic medicine at UC Davis Children's Hospital and co-lead of the UC Davis site for Project Baby Bear.

Download the Project Baby Bear Final State Report.