Mike Siegel, PhD: What's Coming Up in 2024 for PeDRA

Since the founding of the Pediatric Dermatology Research Alliance (PeDRA) in 2012, "we've seen new understandings of diseases that we didn't understand before ... drugs available to patients facing diseases as adults, and an expectation that we can hopefully have the same sort of treatments available for kids," said Mike Siegel, PhD, PeDRA executive director, in an interview with Dermatology Times.

PeDRA has developed to become a place where researchers in pediatric dermatology can find like-minded people and build on their skill sets to move their careers forward.

In this video, Siegel discusses the opportunities and events PeDRA offers anyone interested in pediatric dermatology—including doctors, nurses, PAs, students, and parents of children with skin conditions.

Transcript

Hi. I'm Mike Siegel. I am the Executive Director for the Pediatric Dermatology Research Alliance (PeDRA).

Dermatology Times: Why was PeDRA founded, and how has it grown?

PeDRA was founded in 2012, in response to the recognition among many different people that the pace of research in the field of pediatric dermatology was too slow, that there were not enough (or even any, in some cases), treatment options available to children and families facing the burden of childhood skin disease.

So a group of leaders from the Society for Pediatric Dermatology, in collaboration with other stakeholder groups, including the NIH, really recognized this need, and observed models that were present in a number of other disease spaces like rheumatology and cancer, where there were these collaborative research groups that brought people together. Even if a field was sparsely populated, there weren't a lot of health care providers or clinician scientists actually working in the field, not a lot of treatment available, not a lot of research moving forward and a meaningful pace.

They saw these models, and decided that we needed this kind of thing in the field of pediatric dermatology as well. And so they kind of acted along those same lines, and formed PeDRA in 2012. At the time, it was 50 to 100 people who were interested in research. There were clinicians who were already seeing a need for research, seeing important research questions, but not necessarily with the ability or the infrastructure available to build meaningful datasets to actually move research forward on a pace that really would impact patients that we're seeing in the clinic every day.

So that was really the the impetus for PeDRA forming from there. So that was about 11 years ago. Now, we have evolved steadily, I'd say slightly potentially outpacing the evolution of the field of pediatric dermatology, which has really come a long way.

Since then, we've seen drugs come to market, we've seen new understandings of diseases that we didn't understand before, drugs available to families, and drugs available to patients facing diseases as adults, and seeing in the near future, an expectation that we can hopefully have the same sort of treatments available for kids.

So from those early days, when we had 50 to 100 people back in 2012, our membership now is more than 700 people. We support active research in 11 different disease areas or topic areas. We have a very robust annual conference grants and fellowships program, an educational platform, and we are constantly look to invest in more resources and more infrastructure that continue to help us grow and move the field forward.

Dermatology Times: What are some current challenges and opportunities in pediatric dermatology research and treatment options?

I think there's a lot of ... certainly challenges exist, but it'd be great to frame this response in more of a positive way: What are the opportunities? I'm glad to use that word. There's tremendous opportunity, you know, to kind of be learning from the past, both the distant past when there's really nothing available in the field of dermatology to treat patients, and the more recent past what we've seen acceptance of different treatment modalities, the benefit of understanding diseases on a deeper level, and kind of recognizing the need and appreciation for research to drive the field forward.

So, you know, one opportunity in particular is around the youth of this field. So it's kind of been this established group of people in the field who have been committed and doing research for a long time. It's kind of a challenging field to work in for a number of different reasons. But we're seeing a lot of interest from kind of students and early career investigators, residents, fellows, people who see opportunity in the field of pediatric dermatology, want to build out their skill sets to be able to do more.

And they certainly see PeDRA as a home where they can find other like-minded people, build on their skill sets and actually make research a part of their career moving forward. And I think while that's not subject-specific, necessarily, I think that really shows a lot of promise for the future of this field. As long as we continue to cultivate it in the right way.

We continue to nurture it in the right way, groups like PeDRA continue to invest in these people, bring them together in the right way. I think we can we can really look forward in the next maybe 10 years to having a really strong group of clinician scientists and other researchers. Driving things forward in this space.

Dermatology Times: How can dermatologists join PeDRA, and what does a membership offer?

We make it very easy to join PeDRA. There is a simple application. If you're an established clinician scientist in the field of dermatology, you would come to PeDRA as an active member. So follow the Join Us link on the PeDRA website and fill out a simple application, it will be reviewed, and you should be onboarded, assuming your application is approved, within a matter of weeks. Once you're on board, we connect you with not only our vibrant community of members who are there alongside you once you become a member.

We have a Resources for Researchers page on the website, which will connect you with things that help you build out your skill set and move your research forward. We have a great annual conference, for which there's a significant discount for registration if you are a PeDRA member, and a number of other things and a growing list of resources; we're always looking to provide more to our members.

We have a number of other membership categories, which I'd love to share a little bit about. So in addition to active membership, we have an affiliate membership category. So this is actually for nurse practitioners, PAs, basic science researchers, folks who wouldn't necessarily say, "Oh, I'm a pediatric dermatologist, I want to do research." These are for other folks who share a common interest in PeDRA's mission and vision; they want to do more, they see the opportunity. And they're able to join for a slightly reduced rate following a similar process as an affiliate member.

In addition to that, we have two free membership categories. And these are for trainees. So if you're a student, a resident or a fellow, your membership with PeDRA is completely free. You do need to follow the application process through the link on our website and be approved and then gain access as a trainee until you've finished training, at which point we'd expect you to convert over to one of the other categories, and a final membership category called Community Membership. So this is actually if you're a patient or a parent, a patient advocate or somebody who's really outside the space of medicine or research, but interested in being connected with the pediatric community.

Ultimately, I didn't mention this earlier, but in the early days, recognition from patient groups and the value of a collaborative research organization in pediatric dermatology was one of the things that helped us get traction and actually evolve as an organization. We always put patients first, and having patients at the table with our members as PeDRA members is of utmost importance to us. So we have this community membership opportunity for folks from that group to join us.

Dermatology Times: What can we expect from PeDRA in 2024? When is your annual conference?

2024 is going to be an exciting year for us, you know, we continue to grow, I think at a great pace. A number of educational programs will be launched. We're rounding out a program currently dedicated to industry engagements, helping investigators understand how to work with industry partners and how to optimize the output of research through those collaborations.

We're launching a program dedicated to hidradenitis suppurativa coming out by podcast in 2024. It's going to be a great program in a very active area. We plan to offer 9 different competitive research grant and fellowship programs in 2024. With a budget of about $500,000 across the year. I'd just direct you to our website to learn more about them without talking you through each one right now.

But a couple of exciting and early ones will be our Research Fellowships Program, which provides funding for a year of mentored research for a medical student or a recent graduate, or our emerging investigator research grant program, which is similar to research fellowships, but on a smaller scale, providing a smaller dollar value for a medical student, or in this case, also a pediatric resident if you're on a pediatrician career path and want to gain exposure to pediatric dermatology—which is extremely important because so many children and families are seeing the pediatrician or the family medicine provider for skin conditions—to gain a 4- to 12-week mentored research experience, which can be done either virtually or in person.

So those are a couple of things coming up early in the year. In terms of our 2024 annual conference, we just finished our 2023 annual conference which took place in Atlanta just a couple of weeks ago and was a tremendous event. Many are saying the best event we've ever had, and I got the same feeling from having been there.

In 2024 we will be in Phoenix, Arizona from October 24th to 26th. We're excited we've already confirmed our keynote speaker, who will be Jean-Laurent Casanova from Rockefeller University, an investigator who will be able to share some really meaningful things with our audience. We are just getting to work on building out the rest of the agenda for that meeting.

Dermatology Times: What interesting research has come out recently thanks to your funding?

One of the things we are very proud of with PeDRA is kind of spreading attention across all the different research that needs to be done in the field of pediatric dermatology. It's not any one disease. We have 11 different collaborative research groups working actively, we have work taking place outside the bounds of those collaborative research groups on topics that don't necessarily fall under any one area.

But one thing I did want to showcase as being exciting, we just put in place our 11th collaborative research group, we call these focus study groups. For a long time, we had 10 of these groups, then just in the last few months, we added the 11th. And it's actually dedicated to education. So not any one disease area that you might expect from a group like PeDRA, but actually recognizing the need to educate the next generation of clinician scientists and researchers in the field in how to best educate patients and families, for them to be comfortable potentially with making decisions that will impact their their disease management and their future health outcomes. And kind of understanding all the different nuances that go along with this.

How do you understand the impact of one of the programs that I just mentioned, focused on industry engagement rates or something else. And so now, as of recently, this group just met for the first time at our 2023 annual conference, we have a collaborative group actually dedicated to that. And I'm really excited to see what comes from it.

In addition, we are seeing a lot of activity in areas where you'd probably expect a lot of research is taking place: in HS, a lot of research continues and fields like eczema, birthmarks. Something more generally, that I think is exciting to see coming from PeDRA is our activity along the lines of building consensus guidelines or best practice recommendations. So something that is missing in many cases in the field of pediatric dermatology, where there's not a lot of health care providers, treating a very large number of patients, not a lot of evidence, necessarily driving decisions that are being made [and] not a lot of FDA-approved treatments, but still, obviously a tremendous motivation for the healthcare providers and families to do something. So we have a dedicated grant mechanism that supports consensus work.

Going into next year, we're looking to really evolve the way that we support consensus work to move things forward more efficiently, and help support all stakeholders in the fields who would look to documents to help inform their management for a particular disease. Currently, we have we have a number of projects underway in the consensus development area, but one that should be coming up pretty soon it will be really important and exciting to see is focused on pediatric vitiligo actually. So seeing that come forward and seeing the other types of consensus projects move forward as well as something else that I'm very excited for.

PeDRA's mission and vision are really at the forefront of everything that we're doing in our professional organization. But I've always been proud of the fact that we're we're kind of unique in that we're very mission-driven, focused, we are looking for outcomes and looking to openly collaborate and support anybody who is interested in seeing us move towards our mission and vision. So that really almost simplifies the way we do things.

Our doors are open, we're looking to work with you if you're interested in working with us. It's it's an exciting, very welcoming, collaborative community that really just warms your heart to be a part of.

So I think if you're curious about us, consider joining as a member or consider our annual conference in 2024 as an opportunity to kind of check things out, as well as our grants and fellowship opportunities as things that—whether you're already in the field of pediatric dermatology or you're considering it—something where you can really kind of get a sense for what we're doing, and get connected with this community for the benefit of patients and children who are in need.

[Transcript lightly edited for space and clarity.]