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Children's Mercy Kansas City's new research building opens, accelerating the discovery of cures and transforming pediatric care

Press releases may be edited for formatting or style | February 19, 2021 Pediatrics
Precision Therapeutics – Uses patient-specific information to optimize treatment for individual patients, which is supported by one of the largest pediatric clinical pharmacology programs in the nation.
Population Health – Research focused on the communities we seek to help. Identifying the personal, social, economic, and environmental factors that influence the health of a child.
Health Care Innovation – Identifies and advances products and processes that optimize the medical, surgical and therapeutic management of disease in children.
One of the initial flagship research projects of the CMRI is Genomic Answers for Kids (GA4K) – a first-of-its-kind pediatric data repository that is collecting genomic data and health information from 30,000 children and their families over the next seven years, to create a database of 100,000 genomes.

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The data collected for GA4K will be openly shared with the wider international rare disease research community to hopefully lead to the discovery of unconventional genetic variants.

More than 2,230 families with rare disease and more than 2,600 patients have enrolled in the program to-date, which has resulted in more than 10,200 new genomic analyses, more than 250 genetic diagnoses and already contributed to the reporting of 10 new disease genes. In addition, the program has advanced research genomic analyses for children of 350 families with more common childhood disease: cerebral palsy and Down's Syndrome.

The Sodens are just one of the families to receive answers through genetic testing. Ben Soden was a healthy teenager and high school wrestler when he started experiencing a rapid heart rate, even while resting. This was mysterious and worrisome since athletes normally have a low heart rate. A genetic test determined he has a rare genetic variant that causes his body to slowly metabolize a certain class of medications including his ADHD prescription.

"It was pretty amazing how quickly they were able to link my symptoms to my ADHD medication – what if I was one of those kids who suddenly had a heart attack in a middle of a wrestling meet and had no idea why?" Ben said. "The experience definitely made me think about all the other kids who could benefit in the future through genetic testing and hopefully lead to saving a lot more lives, like mine."

Ben's diagnosis, along with the DNA sequences based on three other Children's Mercy patients, is displayed on the all-glass façade of the CMRI building. The windows represent the genetic anomalies and are illuminated at night, which was unveiled at the Grand Opening celebration. Ben was asked to flip the ceremonial switch.

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