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Geisinger takes giant steps toward precision medicine with its EHR-linked genomic initiative

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Expects to recruit more than 250,000 people for largest U.S. study.

Geisinger Health System has enlisted 100,000 people for its genomic study and did so more quickly than expected. Attracting so many volunteers over two years has prompted program executives to raise the bar to 250,000 or more participants.

The study called MyCode Community Health Initiative launched in January 2014 in collaboration with the Regeneron Genetics Center. It is the largest study in the United States with electronic health records linked to large-scale DNA sequencing data.  

Health system officials credit the success to Geisinger patients' "stability" in the region.

"The families in our core markets are multi-generational and the population is incredibly stable, meaning they don't move away from the area, Geisinger President and CEO David T. Feinberg, MD, said in a statement. 'When we ask to look into their genome, they tell us 'yes' based on trust and respect."

[Also: Geisinger CEO David Feinberg, MD, on patient satisfaction, population health, genomics and more]

The information gleaned from the MyCode study will contribute to a broad range of research aimed at understanding, preventing or improving treatments for disease.

"Our ultimate goal is to help improve healthcare by finding ways to diagnose medical conditions earlier or before they appear and also find new treatments or medications to manage these diseases," said Geisinger Chief Scientific Officer David H. Ledbetter.

"MyCode is not only one of the world's largest genomic studies, it's also the most comprehensive with medical record data going back to 1996. Combining DNA sequence data with 20 years' worth of medical records is groundbreaking," Ledbetter explained.

Geisinger is returning results to patients who are at risk for 27 conditions, for example Lynch syndrome, which can result in a higher than normal chance of developing colorectal cancer, endometrial cancer, and various other types of aggressive cancers at a young age, or familial hypercholesterolemia, which can cause heart attack and death at an early age.


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