KC Business Journal: Children's Mercy hopes new data repository gives sick kids answers, hope
By Lily Lieberman
Children's Mercy is providing Kansas City families with something that can't be measured: answers.
"We're slowly starting to release results for families that have, on average, waited five to seven years for a diagnosis," said Tomi Pastinen, director of the Center for Pediatric Genomic Medicine.
The Children's Research Institute of Children's Mercy is in the early stages of building a first-of-its-kind pediatric data repository to facilitate the search for answers and novel treatments for pediatric genetic conditions.
Pastinen said the goal is to collect genomic data and health information for 30,000 children and their families over the next seven years, creating a database of nearly 100,000 genomes.
One in 10 Americans live with a rare disease, and 50% of those are children. Only 5% of rare diseases have a Food and Drug Administration-approved treatment, and thousands of genetic diseases affecting children remain undiscovered and untreatable.
Read the full story via the Kansas City Business Journal
Learn more about the Genomic Medicine Center at Children's Mercy