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Ending the Diagnostic Odyssey: Project Baby Bear & Beyond

Project Baby Bear

It’s very rare to be able to use the most advanced, innovative medical technology to improve a child’s life and save money, yet Project Baby Bear did both.

Led by Rady Children’s and funded by the State of California, Project Baby Bear provided rapid Whole Genome Sequencing for infants hospitalized in intensive care while yielding life-changing benefits and saving $2.5 million in medical costs.

Under the 18-month program, the genetic code of 178 critically ill babies at five hospitals across the state was sequenced to diagnose and guide personalized care resulting in shorter hospital stays, fewer unnecessary procedures with better outcomes for the children and their families.

Pilot Sites # of Babies Babies Diagnosed Babies Whose Care Was Changed* Days to Results**
Children's Hospital Orange County 23 12 (52%) 9 (39%) 2.5
Rady Children's Hospital-San Diego 59 22 (37%) 19 (32%) 3
UC Davis Children's Hospital (Sacramento) 34 12 (36%) 8 )24%) 2
UCSF Benioff Children's Hospital Oakland 24 12 (50%) 8 (24%) 2
Valley Children's Hospital 38 18 (47%) 10 (26%) 3
TOTAL PROJECT BABY BEAR CASES 178 76 (43%) 55 (31%) 3

*Results confirmed 21 babies were already receiving appropriate care. 
**Median # days to delivery of provisional positive results

Public Health Bills

Inspired by Project Baby Bear’s success, legislation has been introduced in Congress, and in several states, to make rapid Whole Genome Sequencing a covered benefit for babies enrolled in public health programs.

At the federal level, Congressman Scott Peters (CA-52 San Diego) introduced the “Ending the Diagnostic Odyssey Bill” to expand access to Whole Genome Sequencing to help diagnose and inform treatment for children with rare diseases.

In California, Assemblyman Brian Maienschein (D-77) introduced AB114 the “Rare Disease Sequencing for Critically Ill Infants Act”. Sponsored by Rady Children’s Hospital, the proposed measure would cover rWGS for infants enrolled in Medi-Cal. As of Spring 2021, AB114 was making its way through hearings in the State Assembly.  

State Projects

Inspired by the success of Project Baby Bear, other states are following with their own programs to publicly fund rapid Whole Genome Sequencing for infants.

Michigan's Project Baby Deer

In 2021, the Michigan Health and Hospital Association launched Project Baby Deer, a statewide initiative offering rapid Whole Genome Sequencing to critically ill babies and children. The goal is to make Michigan the first state in the national to offer rWGS to all babies and children up to 18 years of age that meet clinical criteria, regardless of location or type of insurance.
Project Baby Deer logo

Florida's Project Baby Manatee

In 2021, the Michigan Health and Hospital Association launched Project Baby Deer, a statewide initiative offering rapid Whole Genome Sequencing to critically ill babies and children. 

Nicklaus Project Baby Manatee Logo
In 2021, the Michigan Health and Hospital Association launched Project Baby Deer, a statewide initiative offering rapid Whole Genome Sequencing to critically ill babies and children. The goal is to make Michigan the first state in the national to offer rWGS to all babies and children up to 18 years of age that meet clinical criteria, regardless of location or type of insurance.

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