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Children’s Mercy scores millions for pediatric research

The comprehensive pediatric medical center has received $16 million in donations for its Genomic Answers for Kids research initiative, which also serves as the flagship initiative for the anticipated Children’s Mercy Research Institute set to open in 2021.

Kansas City-based Children’s Mercy announced on Wednesday a donation worth celebrating for its Genomic Answers for Kids research initiative.

Donations brought in $16 million for the program which serves as the flagship initiative for the highly anticipated Children’s Mercy Research Institute set to open in 2021.

Thousands of genetic diseases affecting children remain undiscovered and untreatable, though with the donation and the approaching opening of the new Children’s Mercy Research Institute (CMRI) in early 2021, the hospital hopes to gain ground in research.

Genomic Answers for Kids is a first-of-its-kind pediatric data repository and works to accelerate the search for diagnoses and novel treatments for pediatric genetic conditions.

Pediatric research is significantly underfunded as the National Institutes of Health allocates only 10% of its $37 billion research budget to pediatrics and currently only about 20% of kids with rare or life-threatening diseases get an answer from genetic testing. Tomi Pastinen, MD, PhD, director of the Genomic Medicine Center, said this project will improve those outcomes. “On average, families wait five to seven years for a diagnosis and that’s simply too long – this database will be used to identify other genetic diseases, and research treatments and cures in the future. It will move kids to the front of the line.”

The goal of Genomic Answers for Kids is to collect genomic data and health information for 30,000 children and their families, creating a database of nearly 100,000 genomes.

“Normally to get a project of this magnitude up and running it would take years, but because of this $16 million dollar gift, we already have more than 1,750 families enrolled in the program, which has resulted in more than 6,000 new genomic analyses, more than 170 genetic diagnoses with new answers found every week, and contributed to the discovery of eight new genes,” Dr. Pastinen said “We’re investing in thousands of families here in the Kansas City region and beyond to give families the answers they deserve.”