Genomics research effort to use $8.5M grant to expand data sharing

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Three large pediatric hospitals plan to use proceeds of a National Institutes of Health grant to expand and extend their data-sharing collaboration to other facilities.

The $8.5 million grant to the Genomics Research and Innovation Network (GRIN) will covers several years of efforts to expand it into a larger federation of medical centers that are able to share large amounts of genomic information while protecting patient privacy.

The grant comes from NIH’s National Center for Advancing Translational Sciences.

GRIN was formed in 2015 with Boston Children’s Hospital, Children’s Hospital of Philadelphia and Cincinnati Children’s Hospital as founding members. Since then, UPMC in Pittsburgh and Washington University in St. Louis have joined the project to help it grow.

The long-term goal is to build a genomic “information commons” that will enable more medical centers to share increasing amounts of data.

The ability to ingest large amounts of information is important as researchers seek to incorporate genomic data in finding better ways to treat patients, particularly those with rare diseases, GRIN participants say, contending that the most significant barriers to pediatric research has been the ability to identify and recruit large-enough patient cohorts.

To determine whether a patient's genes contain disease-causing mutations, their DNA must be compared with that from large populations. Furthermore, that DNA must be accompanied by contextual information about the population as a whole. Current databases generally do not link genomic data to diagnosis, clinical progression and therapeutic response. As a result, advances in incorporating genomics into treatment are limited.

Executives of organizations participating in GRIN believe that expanding a nationally interconnected network of institutions will accelerate success at translating genomic discoveries into better clinical care.

"As medicine evolves from art to digital data-driven science, large datasets are needed for care and discovery," says Kenneth Mandl, MD, director of the Boston Children's Hospital Computational Health Informatics Program and the project's principal investigator. "Clinicians and researchers need diverse reference populations to better understand individual patients' genetic findings, while allowing data to remain with the patients and the hospitals that generated it."

"Patients with rare diseases should be an early beneficiary of this grant's support of our federated collaborative network," says Tracy Glauser MD, associate director of the Cincinnati Children's Research Foundation and a co-investigator in the new grant. "There are over 7,000 rare diseases that in aggregate create a large impact on both pediatric and adult public health. The grant funding will accelerate our federated network's ability to make both impactful discoveries and improve care through more rapid and efficient sharing of genomic information for all of these disorders."

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