In this final episode, we examine how academia and industry work together to advance research and improve patient outcomes. The conversation highlights real‑world examples of shared data, translational science partnerships, diagnostic insights, and coordinated patient care. Listeners gain a deeper understanding of how combined expertise strengthens clinical trials and expands access to innovative therapies.

This independent medical education program is supported by Incyte.

Click here for a complete list of disclosures.

Hello and welcome to PeDRA Pearls, the podcast from the Pediatric Dermatology Research Alliance.

We are a vibrant research community pursuing a mission to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease.

Each week, we bring you inspiring stories, research updates, and practical information to advance science that improves the lives of children with skin diseases and conditions.

I'm Jen Dawson, host of PeDRA Pearls and Pedra's Director of Educational Programs.

I'm so glad you're here.

Before we jump into our episode, just a quick note.

Full disclaimers will be provided at the conclusion of the episode and further information along with relevant links are available in the episode notes.

Welcome back to the third and final episode of our clinical trial series.

In this discussion, we explore how academic centers and private industry can work together to strengthen research, expand patient access, and drive meaningful innovation across the clinical trial landscape.

Our guests share real-world examples of collaboration, from data sharing and translational science partnerships to joint efforts that improve diagnostic insights and therapeutic decision-making.

Let's dive in to how these combined strengths are reshaping the future of patient-centered research.

I would like to welcome back your host for this final episode, Dr.

Thy

Huynh.

Dr.

Huynh is a pediatric dermatologist and assistant professor in both dermatology and pediatrics at the University of Mississippi Medical Center.

All right, Dr.

Huynh, over to you.

I'd like to welcome back our guests, Dr.

Jason Hawkes and Dr.

Jeff Sugarman.

I'd like to welcome back our guests, Dr.

Jason Hawkes and Dr.

Sugarman.

Yeah, thanks for having me.

I'm Dr.

Jason Hawkes.

I'm a board-certified dermatologist and the co-owner and chief scientific officer and investigator at the Oregon Medical Research Center in Portland, Oregon.

Dr.

Jeff Sugarman.

Thank you so much for having me.

I am a board-certified pediatric dermatologist.

I'm the medical director at Redwood Family Dermatology, which is a fairly large

multi-specialty dermatology practice.

Let's get started with Dr.

Sugarman.

How do you feel like collaborations are going with academy and industry and how does it reshape research?

Well, thank you again for having me back.

I think that can take a lot of different forms.

I'll just give you one example.

You know, we had a patient with a really sort of severe and unusual

case of psoriasis at our clinical site a number of years ago, and we teamed up with an immunologist at UCSF to do immunoprofiling and see what kind of cytokines this patient was producing to help us understand what therapies might be best.

Should we put them on an IL-17 inhibitor?

Should we put them on an IL-23 inhibitor?

How should we try to treat this patient?

And so you can formalize that by actually going to the FDA and starting your own trial, even with one subject.

In fact, I've done that for a patient with a very rare disease where we started a clinical trial with an N of one and wound up giving them a really innovative biologic and had really great success.

It was really life-changing for everybody involved in that study.

But there's lots of ways for private and to collaborate with academia.

Dr.

Hawkes, what about you?

Yeah, I agree with what Dr.

Sugarman said.

And when we start to look at the role of the partnership, again, it goes back to where do I see clinical trials fitting?

And they're another avenue to extending care.

Again, we have patients who can't access

some of the healthcare systems because they lack insurance or financially they can't afford some of the visits or procedures or testing that we're talking about here.

You have patients who don't have these academic centers nearby.

And the one big problem with academic centers is that you have a bottleneck.

You have a lot of people wanting to get in.

and not enough providers.

And because of the nature of academia, many of these individuals and specialists are doing research or have teaching responsibilities.

So the waits tend to be longer.

You know, just as an example here in Oregon, we have patients, you know, complain that they can't get into dermatology for sometimes six to nine months to see a particular provider.

So the partnership with academia and private research sites

helps fit that in a lot of ways.

We can offer basically no cost care for these specialized conditions.

They get medication for free.

They can get stipends, they get payments, they can get reimbursed for their time.

We have patients who actually fly to our site from other states to come get some of these top medications.

And the other advantage to patients that we see and we frequently talk about is patients will often come in afraid to want to access these systems and get in clinical trials.

But actually, one of the advantages is that rather than seeing your dermatologist once every six months or once every few months, we get the pleasure of seeing these patients sometimes every two weeks or every four weeks.

And we really start to build more intimate relationships with these patients.

We learn the nuances of their disease.

We don't see how they improved over three months.

We get to see their improvement sometimes over weeks.

And there are trials where we have them come in at week one, week two, week four, week 8.

And you get to see a different level.

of improvement and you start to ask questions that you wouldn't ask in a traditional center.

We're talking to them about their mood and how they feel and how their disease is interrupting with their sleep or their intimate relationship.

So I feel this is a magnifier into the relationship and the patient experience that to me is rewarding and I think they find it rewarding.

as they start to learn more about the disease and have multiple touch points.

So I think we can have a really significant impact on these patients.

And many times we're the first time these patients have ever been on systemic therapy.

So it might be their first oral medication or first systemic biologic, for example.

And we can help them see what life is like without their persistent widespread disease in many cases.

So I think that partnership

with industry and these companies, they're just one of the many shareholders, part of our healthcare system, and I think they're going to become more of a fixture in that delivery mechanism as time goes on.

You touched on the point about patient rapport with these trials.

I will say that

the patients that tends to be in these trials, they're very giving.

They want to give back to science and if not help themselves, helps others.

And that's one of the big things in pediatric trials because it is very, very hard to recruit.

So some of it is a very altruistic endeavor.

particularly in the peds realm.

Now, let's kind of dive into the role of advocacy groups and networking.

That's a big deal within pediatric germatology research.

And I'd like to kind of ask Dr.

Sugruben's viewpoints on how they play a role into trials.

Well, they can really play a huge role because they've got

lists of patients with their diseases and they can help recruit to, if they know about a study that's enrolling, they can help with recruitment.

So I really see them playing a huge role in that way.

Some of these patients really are disconnected from, you know, clinical research and they don't know that there's a trial that's even going on.

And so a patient advocacy group can really help spread the word about new trials in their area and help with enrollment.

It's really hard to recruit young children into clinical trials.

So toddlers and infants, it's the hardest.

I mean, parents are reluctant to sometimes have their kids involved in trying an experimental drug.

They're reluctant to subject their kids to blood draws.

There are a lot of barriers to enrolling small children, but it's really important that we do because we really need to have that information because we wind up using a lot of drugs off-label because they haven't been studied in children, especially in young children, infants and toddlers.

So I kind of feel like if the disease is severe enough,

you're going to be able to recruit young patients because people really need something.

And for the diseases that aren't as severe, it's really tough.

Also depends on where you are in the country.

And this is sort of a shame, but like in more affluent suburban areas, I think people tend to be more reluctant to participate or have their children participate.

Whereas in more inner-city areas, where as Dr.

Hawk said, there aren't as many resources, that's going to maybe be their only option to get treatment.

And Dr.

Shergun, to build on what you're saying as well, and with regards to pediatrics in general, and even pediatric dermatology,

When you look at some of the available therapies for adults, say again, psoriasis, where you have, 13 biologic therapies, you have less than 50% of that same medication group that's available for pediatrics.

And it's even worse when you look at things like psoriatic arthritis or, you know, juvenile arthritis, inflammatory arthritis.

So one of the important

aspects I like to talk about in trials is that we need to lift the areas that are lagging behind.

Some of these newer therapies and the adults actually have advantages that should be extended to kids.

are medications that are more targeted they hit less of the immune system they have less frequent shots for example some of these medications being given once every three months which has clear advantages over a medication that's given every two weeks um but because of the population the concern with you know just kids in general but also parents uh and the safety of some of these medications we haven't seen as many trials

in this demographic, but it's really important because we know that even the pediatric and infant populations can have very severe troublesome diseases that we need to have these trials to show the safety and the tolerability.

And so we need to actually continue to advocate for more trials in a broader range of demographics across the world to help extend and expand the therapies that are approved because we see that lag in the pediatric realm in general.

So for pediatric trials, we bring up some ethical questions because parents are so concerned.

What would be some tips, or how do you explain to a parent who's going to enroll the pediatric patient, Dr.

German?

What would you say to them to maybe tell the pros and cons for a child visit?

I really feel like for the

initial trials with Dupixent.

We were a study site for their pediatric indications, and it was amazing.

People were lined up, calling the office, asking when we were going to start enrollment.

So for that particular disease and for that particular medication, it was really pretty easy because, you know, eczema is very common, but

Luckily, severe eczema is not, but when it's severe, it's just a devastating disease.

And these families just didn't have any options.

And so people just couldn't wait to try to be in the trial and hope that they would not wind up in a placebo arm.

So again, when I said, you know, it depends how severe the disease is.

So recruiting when you have a severe disease that's really affecting your quality of life is actually not that hard.

I had a prior clinical trials at Northwestern, and it was for diaper dermatitis.

It was very, very hard to recruit because they tend to resolve with current therapies, and the very severe one definitely did not want a placebo or what you would call no treatment.

Dr.

Haltz, do you have any tips regarding what you would talk to parents about pros and cons of a trial, mild disease,

is definitely a challenge.

Yeah, I usually like to start off in because we do some of the adolescent and we have studies that even allow for children to be enrolled.

We don't typically do infants, but certainly pediatric adolescent trials that and some of those are coupled in and mixed in the same trial with adults.

But I like to meet people where they are with their disease.

I want to understand

What's the severity?

What's the impact on their life?

I think when you're talking to parents, you know, we saw a patient very recently here with pretty severe alopecia areata, so that's non-scarring hair loss, and a young girl just getting ready for junior high, and started hearing her story about

being teased and people asking like, you're sick and to have mom think about how to change her hair or braid her hair or comb her hair a certain way that when you start, when you meet the people where they are and they start to see

some of the negative impacts that the disease has had on their life, either by symptoms or how they view themselves, but then also thinking about how it's affected other aspects of their life, in terms of friends and sleepovers.

When you start to talk about that collective impact, I try to get patients thinking beyond just their disease and their symptoms, but sort of the whole impact, you start to see how it affects parents.

And, you know, Jeff mentioned eczema.

That's a condition that has a heavy burden on caregivers, on moisturizers and topical steroids.

They have to give the medication.

So I like to start at what's been the disruption and what's been the impact on your daily lives and your collective experience.

And when people start to talk about that, they see the need for something different or a change.

And I think it opens them up to consider doing something different than what they've done.

And I also like to highlight for those diseases where there are consequences to not doing something.

For example, again, with eczema, we know that it interferes with their sleep, their ability to learn.

We've seen some bone growth data where we see inadequate bone growth.

We see some of the limitations there.

We see their risk of infections, right, when their skin barrier breaks down.

We see, you know, herpes infections, hospitalization.

We see some of these other conditions start to coexist.

And so I always like to counterbalance the weight of the disease and its impact, but also the risks of doing nothing.

or doing something that's inadequate.

And once you hit those gaps, I think together we start to say, is this something that you're interested in, something that you want to explore?

And then I try to end those visits with the confidence of,

You know, we know how to take care of people like you.

We've used these medications.

We have the expertise.

We're here for you.

We won't make it's not hard to get into us.

So I like to leave them with this hope that while this might seem scary or different, we really have all the tools to ensure that that good experience for them.

And I always tell patients, I won't stop trying until I find something that works.

And I always want them to know that even if trial A or B doesn't work, we're going to keep finding and keep searching till we find something to give you that relief so you can see what life is like without that persistent nagging disease.

Thank you so much.

So we highlighted the collaboration between academics and private clinical trials really to benefit the children and

patient outcomes.

Are there any other last-minute tips, Dr.

Sugerman or Dr.

Hopps, that you'd like to add into that?

Meet parents where they are, meet patients where they are, and collaboration is key.

That was well said, Thy.

I like what you said.

It was a pleasure to participate.

Thank you so much for having me.

This was a real pleasure, and I hope that this was able to give your audience some insights into clinical trials.

Yeah, I really appreciated the

being invited to this group and to be able to be with T and my friend and colleague, Dr.

Sugerman, and someone that I've enjoyed working with in this space, and I encourage you all to continue to be engaged in research.

And if you're interested in clinical trials, please reach out to us.

We'd love to help you get involved, and I hope you've enjoyed this few episodes we've done together.

Thank you so much for joining in.

We hope you learned a little bit about how to set up trials, whether academic or private.

Thank you so much to Dr.

Thy Huynh for hosting this three-part series and to Dr.

Jeff Sugarman and Dr.

Jason Hawks for sharing their insights into this topic.

In this final episode, we explored how academic centers and private industry can combine their strengths to enhance clinical research and expand access to innovative therapies.

Our speakers highlighted how collaboration through shared data, translational partnerships, joint diagnostic efforts, and coordinated patient care creates a more efficient, more equitable system for advancing treatment options.

We also discussed the meaningful patient relationships that develop through frequent study visits, the role of advocacy groups in connecting families to research opportunities, and the importance of supporting pediatric and rare disease trials where unmet need remains high.

Just like Dr.

Huynh said, collaboration is key.

It's important to note that the views and information expressed during this podcast do not necessarily represent those of the Pediatric Dermatology Research Alliance or the program guests.

The purpose of this podcast is to be thought-provoking and to stimulate new ideas, new collaborations, and novel research.

Any reference to medical treatment or disease management is for this purpose only.

It is not an endorsement by PeDRA and it is not a substitute for medical advice, diagnosis, or treatment.

Any decisions related to medical care should be made in consultation with a qualified healthcare provider.

For a complete list of guest disclosures, please click the link in the episode notes.

This independent medical education program is supported by Insight.

I would also like to take a moment to thank PeDRA Corporate Council members.

Our gold level supporters are Eli Lilly and Sanofi and Regeneron Pharmaceuticals.

Our silver level supporters are AbbVie, Abiona Therapeutics, Arcutis Biotherapeutics, Chiesi, Incyte, Sanofi, and UCB.

and our bronze level supporters are Disc Medicine, Janssen, and Pfizer.

We so appreciate their shared commitment to PeDRA’s mission as members of the PeDRA Corporate Council.

If you enjoyed this episode, be sure to follow us or subscribe to the PeDRA Pearls Podcast channel wherever you listen so you don't miss future conversations.

To learn more about PeDRA and our work to advance research in pediatric dermatology, visit pedraresearch.org or follow us on social media @PedraResearch.

Until next time, keep listening, learning, and collaborating to make a difference for kids with skin disease.