The second IU Grand Challenges webinar about the Precision Health Initiative (PHI) took place this month, focusing on progress in studying and treating childhood sarcomas, which are cancers that develop in the bones and soft tissues. This webinar featured Jamie Renbarger, MD, and Karen Pollok, PhD, co-leaders of the IU Precision Health Initiative pediatric sarcomas disease research team, as well as Tatiana Foroud, PhD, who leads the IU Precision Health Initiative. Kelly and Tony Trent, parents of the late Tyler Trent, also joined the conversation to share Tyler’s journey of fighting osteosarcoma, an aggressive form of bone cancer. IU Vice President for Research Fred Cate served as the event’s host.
One of the most significant areas of progress within the PHI pediatric sarcomas program is a discovery the team made of an emerging drug combination therapy that significantly slows tumor growth in models, which includes a model established from cells taken from tumors donated by Tyler Trent. The team’s findings are published in the peer-reviewed, international oncology journal, Cancers. This was the first published manuscript that included Trent's tumor model and the team dedicated the research to Tyler.
“It's very critical to integrate and link the patient data and the research data,” said Pollok, who is an associate professor of pediatrics at IU School of Medicine. “What we're doing now is absolutely critical to the next part of this program, to develop metastatic models. Unfortunately, a lot of children die from metastatic disease, when the tumor spreads to other parts of the body.”
Tyler Trent donated multiple tumors to support this research. His mother, Kelly, said it was important for him to not only donate his tumors, but also learn what was happening through the research.
“He wanted to be involved in the process,” said Kelly Trent. “When Dr. Pollok and Dr. Renbarger were at our house in the fall of 2018, he was like, ‘you want this one? You want that one? [offering to donate more tumors]’ He was offering up his body basically, that's just where his heart was. As parents, we want to do anything that we can to continue to be involved and bring awareness.”
“My plea is that we can find a way to get a cure through research for other families, so they don't have to go through the painful journey that we did,” said Tony Trent.
The Trent family has continued to advocate for pediatric sarcoma research, including putting together a charity golf event this month. Originally set for summer 2020, the inaugural event had to be postponed due to COVID-19, but Tyler’s family is looking forward to the fundraiser. Both Pollok and Renbarger will be speaking at the event. They have already experienced Tyler’s impact, and his legacy continues to inspire other people to donate money and tumors for research.
In the last several weeks, a young man – who is a student at Indiana University in Bloomington – started getting treatment for a kind of sarcoma in Cincinnati. Renbarger said that young man wanted to donate some of his tissue to their ongoing research, and by collaborating with the University of Cincinnati, they were able to make that happen.
“I have been amazed to see the interest in patients and families wanting to donate tissue for research based on what they know about Tyler,” said Renbarger, who is the Caroline Symmes Professor of Pediatric Cancer Research at IU School of Medicine. “It was clearly Tyler's legacy that had a profound impact on this young man and his desire to find ways to improve outcomes in kids with really aggressive sarcomas. I expect that we'll continue to see more and more of that.”
The pediatric sarcomas research team is working to include people from many different backgrounds to participate in research, including those from minority populations.
“In terms of racial disparities, there isn't a predilection for relapse or aggressive sarcoma in Black patients or Hispanic patients,” said Renbarger. “Every patient with relapsed cancer is invited to participate in our Indiana pediatric biobank, which is a partner of the Indiana Biobank.”
Pollok said the PHI program has been critical in developing their infrastructure. As they move forward with pediatric sarcomas research, they hope to build on their successes as they work toward new solutions.
“From a research standpoint, we have to be brave enough to fail,” said Pollok. “We can't be timid. We have to have rationale for every hypothesis that we generate, but it’s important to know what doesn't work as well as what is going to work. The data is going to guide which way we're going to go, but we're also going to push the envelope in what we're looking at as far as new therapies in these models.”
Foroud talked about the importance of research and why patient families are so critical to future research successes.
“The only way we can develop new treatments is through the participation of families and individuals who are willing to not only have their own pain and tragedy, but also are willing to contribute and help others,” said Foroud, who is the executive associate dean for research affairs at IU School of Medicine. “That's one of the things that the Trent family has really demonstrated for all of us, the ability to help others walk with them on that journey and see the importance of research. Sometimes it may not help immediately, but we all hope it's going to have an impact in the future.”View the full webinar here.