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Joint Hearing: Project Baby Bear

Joint Hearing of the Assembly Select Committee on Biotechnology and the California Legislative Rare Disease Caucus to be held on Tuesday, October 15, 2019 in San Diego.

"Assessing California's Clinical Whole Genome Sequencing Pilot Project in Medi-Cal: An Interim Report on the Practical Application of Precision Medicine in California"

Research has shown that clinical rapid whole genome sequencing (rWGS) is effective for rapid diagnosis and early treatment of genetic diseases in acutely ill infants in intensive care units, and results in improved outcomes and reduced cost of hospitalization in some patients. Currently, rWGS is not a reimbursed test under Medicaid, and not yet available to most Medi-Cal enrolled infants. On June 27, 2018, the California State Budget appropriated $2,000,000 in funding for a Medi-Cal Whole Genome Sequencing Pilot Program. The State Department of Health Care Services in turn provided this grant to Rady Children’s Hospital – San Diego (RCHSD), a California non-profit organization, in order to execute an rWGS Pilot Program now named “Project Baby Bear.”

Pilot Project Objectives

Project Baby Bear is a Quality Improvement (QI) project that is employing rWGS for at least 100 acutely ill children enrolled in the Medi-Cal program at a minimum of four neonatal/pediatric Medi-Cal intensive care sites. Rady Children’s Hospital – San Diego in conjunction with Rady Children’s Institute for Genomic Medicine is evaluating the extent to which rWGS changes the cost of patient care and patient outcomes within four months of return of results. At the conclusion of the grant period, Rady Children’s Hospital will provide California’s State Department of Health Care Services a report of the cost of care and outcomes of children receiving rWGS compared to those not receiving rWGS. This is an interim report on the 115 children already helped in Medi-Cal.



California Action Link for Rare Diseases Inc. (CAL RARE), 1811 Santa Rita Road, Suite 224, Pleasanton, CA 94566

CAL RARE is a registered 501(c)(3) non-profit organization #81-5461840
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