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Intermountain Primary Children's Hospital Launches HerediGene Children's Study

NEW YORK – Intermountain Primary Children's Hospital said on Wednesday that it has launched the HerediGene Children's Study, the largest DNA mapping effort ever to be undertaken in kids.

The study will involve the voluntary collection of 50,000 DNA samples from children as young as newborns, as well as any parents and siblings who wish to participate, at Intermountain Primary Children's Hospital. The data collected through this population study will be used to help researchers at the Primary Children's Center for Personalized Medicine and Intermountain Precision Genomics to better understand genetic diseases, and to develop new ways to treat them.

The Center for Personalized Medicine is a collaboration between Primary Children's Hospital, Intermountain Precision Genomics, and pediatric specialists and researchers at University of Utah Health.

The children's study is part of the larger HerediGene population study, a global initiative led by Decode Genetics and Intermountain Healthcare that was launched in June 2019 to collect samples from 500,000 participants and discover new connections between genetics and human disease. At the time, Intermountain said it would consent patients into the study, collect samples for analysis, and send them in anonymized format to Decode in Iceland for genomic analysis.

Similar to the larger population study, Intermountain teams will work with Decode researchers to map the participants' genomes by collecting blood samples. Participants in the study and their medical information will be de-identified to ensure anonymity, and a small percentage of participants, including children, will have the option to receive their genetic results back in a report if a clinically significant gene mutation is identified.

"[The children's study] represents the largest population study of pediatric genetics and disease in the world," Primary Children's Hospital Administrator Dustin Lipson said in a statement. "Results will inform and transform genetic research and applied genomic medicine at Primary Children's Hospital and across the US for years to come."