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Building a Personalized Medicine Program

Kathleen Barnes, PhD, came to the study of personalized medicine before its name was ever coined. She started her career in medicine as a nurse, then went on to earn a PhD in biomedical anthropology, where she examined how environment and culture impacted the biology of individuals. She completed a post-doctoral fellowship at Johns Hopkins in immunogenetics, where she then worked for 23 years as a researcher examining the genetics of complex lung disease and other immunological diseases.

“It was an exciting field, and we were on the cutting edge,” she said. “But I began feeling limited because we only focused on a particular disease and a particular set of genes.”

She visited CU when the university had just started creating a vision for using “big data” as a path to personalized medicine. After a series of visits, she was asked to lead the Colorado Center for Personalized Medicine and build it from the ground up.

For Barnes, the choice to come to CU was easy. 

“There are points of excellence here at CU that don’t exist at other institutions,” she explains. “The geographic and demographic diversity alone was of interest to me as a researcher. But there are also exciting changes all across campus. There is an influx of new ideas and new talents that I wanted to be part of.”

She began her tenure at CU in 2015. Her first order of business was building out all the parts that make a center, a center. “After being at Johns Hopkins for so long, it was a steep learning curve to come to CU and learn the organizational structure and get to know the leadership,” she admits. Yet within the first year, she created a biobank and established a data infrastructure.

“My job was made a lot easier by CU’s existing health data warehouse,” she said. “We had immediate access to data from 5 million patients.”

Barnes was also responsible for building a team. She recruited from existing campus talent, but because the program was so new, needed to recruit from outside the university. “We’ve brought in top talent from major academic institutions. There’s a challenge in building something from scratch, but the upside is a lot of people want to be part of this growing operation in particular. It’s not hard to recruit people to come to Denver.”

Now that the infrastructure and teams are in place, Barnes is focusing on how to better recruit patients to participate in the program. “Right now we’re only recruiting about 40% of potential participants, and we know other institutions have rates around 80-85%.” She is now working to strengthen relationships between the center and university partners.

Barnes believes the true value of this program is its agnostic approach to disease. While she’s still passionate about her lung disease research, she’s thrilled to be a part of this movement at CU. “We’re looking at genetic data that will influence both rare and common diseases,” she said.  “The people who participate in the biobank are giving our researchers a tremendous opportunity to use genetic data to influence what we know about rare and common diseases. When we translate these discoveries into clinical settings, we will truly make a big impact on outcomes,” she said.

“It’s an exciting time to be at CU.”