Transforming Health in Indiana

As the Person-to-Person Health Interview Study wraps, new follow-up studies are on the horizon, including one regarding the impact of COVID-19 in Hoosier households. The P2P data and participant group also form an important resource for other health, medical, and behavioral research that may help to improve public health, locally and nationally.

The P2P study was led by IU Bloomington Distinguished Professor of Sociology Bernice Pescosolido and Associate Professor of Public Health Hank Green. It was supported by the IU Precision Health Initiative Grand Challenge.

Helping families find answers

Within months of opening in 2020, the IU School of Medicine's Undiagnosed and Rare Disease Clinic was shedding new light on the future for toddler Jordan Edwards and her family. Jordan was having trouble eating and was not gaining weight. When the clinic team performed genetic testing on her and her family, they discovered a rare genetic disorder that was affecting Jordan’s feeding.

Jordan Edwards

The Undiagnosed and Rare Disease Clinic was created for patients like Jordan, who have likely been seen by multiple providers and had extensive testing done but haven’t received conclusive results about their condition. So far, the clinic has evaluated 114 patients, using genetic counseling and sophisticated genome sequencing to search for underlying causes of their symptoms where none has been found.

Directed by Erin Conboy, assistant professor in the Department of Medical and Molecular Genetics and Pediatrics at the IU School of Medicine, the Undiagnosed and Rare Disease Clinic is supported by the IU Precision Health Initiative Grand Challenge.

An enduring legacy

More than two years after his death from osteosarcoma, an aggressive form of bone cancer, Tyler Trent’s legacy lives on in work being done by doctors and researchers at the IU School of Medicine with tumor tissue Trent donated.

In 2020, researchers at IU School of Medicine published findings announcing their discovery of a combination therapy that significantly slows tumor growth in models, which included a model established from one of Trent’s tumors. The research team found a genetic variation in the tumor and then determined that two known drugs used together blocked tumor growth substantially during a four-week treatment. The team published their research in the international oncology journal, Cancers, as the first published manuscript that included Trent’s tumor model.

Karen Pollok, associate professor of pediatrics at IU School of Medicine, and Jamie Renbarger, Caroline Symmes Professor of pediatric cancer research at IU School of Medicine, who led the research, say the study provides a path toward improving outcomes and finding cures for more children, adolescents, and young adults with osteosarcoma. The doctors also say they will be forever grateful to Tyler Trent for his dedication to cancer research advocacy.

Description of the video:

[Music playing]

Tyler Trent, a young man wearing glasses and using a crutch, walks onto screen. He hands a file to a nurse wearing blue scrubs.

Nurse speaks: Good afternoon, thank you, sir, how are you?

Tyler speaks in voiceover as nurse and he walk down hall: Everyone has a story, there just needs to be someone willing to listen to that story

[Childhood and family photos of Tyler Trent fade on and off screen]

I'm Tyler Trent, born and raised in Carmel Indiana. I’ve been a die-hard sports fan for pretty much my entire life, just finished out my freshman year at Purdue University.

[Kelly Trent, Tyler’s mother, appears on screen, seated and talking to camera.]

Kelly speaks: Tyler has always been relentless; he's relentless, he's efficient, he's a hard worker, he's smart, you don't tell him no.

[Music plays. The words “Tyler Trent has everything going for him, except a cure” appear in white letters against a black screen]

Tyler speaks, seated and speaking to the camera: I'm not going to sit here and say life isn't fair to me because I got osteosarcoma three times; I rather go out and do something about it.

[Music plays. The words “His first battle with osteosarcoma started at age 15. The cancer invaded his bones again two years later” appear in white letters against a black screen]

Tyler speaks: I had told them that, you know, that there wasn't any way that I was going to be kind of missing starting college

[Photo of Trent with bald head appears on screen]

Tyler speaks: In August, a week and six days before classes started at Purdue

[Photo of Trent, asleep in hospital bed and attached to monitors, appears on screen]

they removed my pelvis and my hip. February-ish, I started having some pain in my back

[Close up photo of Trent sleeping in hospital bed]

so they did a biopsy on it and found out that it was a third osteosarcoma tumor that was growing on my L3 on my spine.

[Black and white photo of Trent in hospital chair with family kneeling in front of him. Photo fades to video of nurse with scanner.]

Nurse speaks: Any questions before we get started? All right.

[Man wearing blue shirt with tie appears on screen. Words “Sandeep Batra, M.D., Pediatric Oncologist” appear to his left]

Batra speaks: With precision genomics we've been able to identify specific treatments which may actually work for him and keep him in a relative remission.

[Video fades to Tyler, seated and speaking to camera]

Tyler speaks: The scans today are essentially to figure out if that chemotherapy that we've been doing, if it's working.

[Video transitions to scanning room, with Tyler inside a scanner and his mother standing to the left.]

Tyler speaks in voiceover: I just trust in the Lord that whatever the results are

[Video of Tyler on gurney inside the scanner]

it’s what he's got planned for me and there’ll

[Video pans to show Tyler’s mother looking on with concern]

be good that comes out of it no matter what the outcome is.

[Video of young woman with long brown hair wearing glasses, seated and speaking to the camera. The words “Bailey Ransburg, 2017 Purdue University Dance Marathon President” appear on the screen to the left.]

Ransburg speaks: Last year I was the president of Purdue University Dance Marathon and we were very honored to have Tyler Trent as a community member on the Riley Relations Committee

[Video cuts to video of Tyler wearing red T shirt and shorts, sitting on stool speaking to audience]

to see him speak in that way to such a large crowd and mobilize all those people was really special

[Music plays. The words “Tyler also donated his tumor to the Riley Precision Genomics team to help them search for cures” appear in white letters against black screen].

[Video of Tyler seated and speaking to camera]

Tyler speaks: It's hard for me to see anyone else have to go through it. I would I would never want to put that on someone else. So that's why research is important, because without research you're never going to find a cure.

[Music plays. The words “Scans revealed Tyler’s tumor is still growing, and a new one has appeared” appear in white letters against black screen.]

[Video of Tyler seated and speaking to camera]

Tyler speaks: Maybe my drive revolves around the legacy that I leave and the fact that, you know the chances of me living to see cancer eradicated are pretty low but hopefully, you know, hundred years down the line, maybe my legacy could have an impact towards that.

[Video of Tyler’s mother seated and speaking to the camera]

Kelly speaks: You know he's a perfect example of somebody that we need. We need people to donate; we're depending on new things to keep him alive.

[Music plays. The words “As Tyler fights for his life, he has one request for all of us” appear in white letters against black screen]

[Video of Tyler seated and speaking to camera]

Tyler speaks: I mean, donate honestly. Money drives research.

[Video of Dr. Batra, seated and speaking to the camera]

Batra speaks: How can he not be inspiring to people? He is one of the most bravest inspiring people I know.

[Music plays. The words “Friends like Tyler can’t wait. Riley needs our help now to find cures” appear in white letters against black screen.

[Music plays. The words “#GiveHope at” and the Riley Children’s Foundation logo appear on a white screen]

[Music fades out.]



Funding for this research was provided in part by the IU Precision Health Initiative Grand Challenge.

Preventing chronic pain

Associate professor of Kinesiology, Kelly Naugle Ph.D.

It's important to work with students to train and develop future scientists. Students are integral to my research to assist with data collection and processing. Overall, students are vital in the day-to-day procedural work of the Pain and Physical Activity Lab.

Kelly Naugle

Pain specialist Kelly Naugle has worked with individuals with mild traumatic brain injury to identify factors that contribute to persistent headaches after injury in some people but not others and identify strategies to prevent such persistent headaches from occurring. Her goal is to help people avoid using long-term pain medication and determine methods beyond medication to help them. She's particularly focused on what makes people vulnerable to developing persistent pain and identifying ways to prevent pain from being chronic.

Naugle is an associate professor in IUPUI's School of Health & Human Sciences and director of the Pain and Physical Activity Laboratory. She is a 2021 Research Frontier Trailblazer award recipient