Prakash Chandran: Conducting contemporary, meticulous and innovative research to improve patient care is a cornerstone of the Shriners Hospitals for Children and Portland's Mission. Over the years, researchers at the Portland Shriners Hospital have made significant breakthroughs that improve the care and quality of life for millions of children with orthopedic condition.

We are joined today by Dr. Susan Sienko, member of the clinical research team at the Portland Shriners Hospital and current president of the American Academy for Cerebral Palsy and Developmental Medicine. Susan and her team collaborate with physicians and clinicians at the hospital on research studies that examine the efficacy of current treatment options and find new and innovative ways to help children with complex needs.

Welcome to Healing Heroes PDX, the podcast series from the specialists at Shriners Hospital for Children in Portland. My name is Prakash Chandran. So Dr. Sienko, it's great to have you here today. I was hoping that you could start by giving us just a primer on what exactly clinical research is.

Dr. Susan Sienko: So clinical research, there are two types of research, there's clinical research, which is more involved with the patient. And there's basic science research, which is more involved with cells or mice or things like that. And so what clinical research is it's research that evaluates the patient directly and it has a direct impact for patient care.

Prakash Chandran: Okay. And when you say it has a direct impact for patient care, this means that if the study is effective, then maybe it gets published. And if it meets a certain threshold, it goes to inform the treatment of children at the hospital. Is that correct?

Dr. Susan Sienko: Definitely. So what we try and do is find out things that make a difference. And so when you do clinical research, you are looking for things that will change them, not things that obviously would make them worse or don't make any improvement for what you do. You really want to change how they are.

Prakash Chandran: Yeah. And just expanding a little bit more, maybe you can provide a little history on the clinical research department at the Portland Shriners Hospital. Like tell us when and how the department was founded.

Dr. Susan Sienko: So the department was founded almost 30 years ago actually. Dr. Michael Sussman, when he came here as the chief of staff, felt like it was really important for us to critically evaluate the treatments that we give, hence clinical research. And so he wanted to make sure that the care that we provided at the hospital had good evidence behind what they did. So they wanted to make sure that if they were going to provide a certain type of brace or a certain type of surgery or a certain type of therapy, that it really made a difference. And so that's why he set up the clinical research department.

Prakash Chandran: Yeah. That's really amazing to hear that founding story. Just looking at things today, maybe talk a little bit about how clinical research directly applies to patient care.

Dr. Susan Sienko: When we look at a different treatment, if we're looking at a therapy treatment, what we want to do is we evaluate the children before we give the treatment, then we provide the treatment to the child and then we assess them again so that we can really see that we make a difference in things that are important to them. So often we have them choose goals as well as doing some standardized tests so that we really know in comparison to other children how much we've changed them

Prakash Chandran: Yeah, it really does sound like this is the most objective way to do things. Dr. Sienko, walk us through the process for how this works. I know that there's a research study involved. But who exactly initiates this clinical study? And how long do the studies usually last?Dr. Susan Sienko: The research studies come from questions that any of the clinicians have, whether it be a surgeon or a therapist. And that we all sit down as a team and we say, "What's important when we're looking at this research question?" And then, we develop what kind of patients we want to see, what are the things that are most important, and then we figure out how we're going to assess them. I mean, sometimes if it's before a surgery and after surgery, it might be that we see them at the beginning and then we see them one year later and we see them two years later. If it's a quicker study looking at how effective braces are, it might be we see them every three months. It varies depending on what the treatment is or what the outcome is.

We also have some drug studies going on here for children with Duchenne muscular dystrophy, and those are through our pediatric neurologist. And so those children are seen on an ongoing basis. So it changes. That's the nice thing about research, is that your job changes all the time. The outcomes change, the children change, and we get to see a lot of variety.

Prakash Chandran: And then how do you know when a study is concluded? And when is it at the point where the research is used to inform future treatment plan?

Dr. Susan Sienko: So basically, the way it works is depending on how the study is set up. So if it's set up as a one-year study or two-year study, at the end of that, we look at all the results and the idea is to publish it so it gets out there in the community and people can use it for future recommendations for the patients. And so then our physicians or our clinicians learn from the results of our study so that when they're advising the patients, they can say, "Well, we know that this treatment improves your function or changes you this way or that kind of thing."

Prakash Chandran: Okay, that makes a lot of sense. And how then are those clinical findings made available to others in the healthcare community?

Dr. Susan Sienko: Mostly through the publications or presentations that we do at different meetings, that's the most type of things.

Prakash Chandran: Okay. And can you give our audience a sense of the current clinical studies that your department is working on? And I'd even love to hear about notable studies that you've done in the past.

Dr. Susan Sienko: Well, things have changed a little bit since COVID, but one of the studies that we were actively involved in was looking at intense therapy for children with cerebral palsy. And we were looking at two different types of how it's delivered, whether or not you need to come six hours a day, five days a week for three weeks or six hours a day, one day, a week for 15 weeks so that you get 90 hours of therapy. And then we can see whether or not you have to come all together or you could just come once a week for that kind of intense training and get the same results. So kids got randomized into one of the two groups and we have been evaluating them to see which option is the best or maybe they're the same. So that's where we are. So we have studies like that.

We have studies is looking at different bracing effects right now. So which study is given this best results? I think that we've had a lot of different things over the time. We've looked at efficacy of orthopedic surgery versus what's called a rhizotomy, which is a neurosurgical procedure for kids with cerebral palsy. And what we found is that they both improve the function. And I think that's really what's the most important thing about research, is really finding out what improves things for children and especially the children we treat because we want to make their lives better. So by really critically evaluating what we do, then we can provide the best care for them.

Prakash Chandran: Yeah, I love that. And, you know, they always say that you cannot manage what you do not measure. So this research is especially important because it's helping improve the quality of life for all of these children with these unique medical conditions, wouldn't you say?

Dr. Susan Sienko: Definitely. So what we try and do is find out things that make a difference. And so when you do clinical research, you are looking for things that will change them, not things that obviously would make them worse or don't make any improvement for what you do. You really want to change how they are.

Prakash Chandran: So just before we close here, I was wondering if you could share any future plans that you had for the day.

Dr. Susan Sienko: Certainly, the department is actually expanding based on what research the physicians and the system as a whole are interested in. Currently, we are expanding our research to look at sports injuries in children because the Shriner's Hospital System has a sports consortium that is starting to look at and critically evaluate the treatments that are given to children following sports injuries.

The other aspect that we are expanding is looking at genomics or genetics. The Shriners Hospital System has a huge genomics institute in Tampa, Florida, and we are collecting saliva from patients and their parents so that we can better understand the genetic aspects that might be behind some of the children that we see with respect to disability.

Prakash Chandran: Well, Dr. Sienko, I think it's truly fascinating to hear everything that's going on at the Clinical Research Department at Portland Shriners Hospital. So thank you so much for your time.

To get in touch, please call (503) 221-3422 or visit us online at portlandshrinershospital.org. That concludes this episode of Healing Heroes PDX with Portland Shriners Hospital. Please remember to subscribe, rate and review this podcast and all other Portland Shriners podcasts. My name is Prakash Chandran, and thank you so much for listening.