CARRA Live at ACR

In this live episode recorded at the CARRA Reception at ACR in Washington, D.C.,  Claudette Johnson interviews Dr. Stacy Ardoin, the president of CARRA. 

Their interview highlights some of the most exciting developments in pediatric rheumatology research today  – from using the CARRA Registry to conduct comparative effectiveness research to determine which drug works best for which patient to harnessing the potential of biosamples to help answer some of the most important questions in that researchers and patients have. 

Dr. Ardoin, who has been involved with CARRA since she was a fellow, also shares a few ways for patients and families to get involved with CARRA.

Transcript

CARRA Live at ACR

Claudette Johnson: In November, I headed to Washington, D. C. to ACR, the American College of Rheumatology's annual conference. ACR is all about working to improve the lives of patients with rheumatological diseases. Some you've likely heard of, like juvenile arthritis and lupus. Others, I'm guessing you haven't, like JDM. This meeting was a get together of doctors, researchers, and leaders to share research updates about treatments and outcomes. They shared hopes and yes, frustrations with diseases that we all want to conquer.

Claudette Johnson: My name is Claudette Johnson, and you are listening to the CARRA podcast. CARRA is the Childhood Arthritis and Rheumatology Research Alliance. We are doctors, researchers, and patients, all working together to prevent, treat, and cure pediatric rheumatic disease. At [00:01:00] ACR, I made my way over to the big hall where CARRA is set up. I got to hear about all the work that CARRA is doing on behalf of patients.

Mathieu Nelessen: impact that this community is making is just absolutely staggering. This 140 research project portfolio is remarkable. So, the work that you're doing day in and day out, oftentimes not with the bright lights shining upon you, what you do for patients day in and day out is absolutely remarkable. This community is amazing – it’s unlike anything I've ever seen in my lifetime.  

Claudette Johnson: Dr. Stacy Ardoin of Nationwide Children's in Columbus, Ohio is the current president of CARRA. 

Dr. Stacy Ardoin: Next I'd like to recognize a huge milestone for CARRA. This fall we enrolled our 15,000th patient in the CARRA registry.

Dr. Stacy Ardoin: This community is [00:02:00] really magical. I really don't know of any organization that has the sense of community that brings together investigators, trainees, research coordinators, supporters, patients and families all on a common mission. I think it's just so inspirational, so I appreciate that. 

Claudette Johnson: And then, I was introduced to talk a little bit about the podcast.

Dr. Stacy Ardoin: She was diagnosed at age 9 with localized scleroderma and through her experience and her commitment has gone on to become an incredible advocate for us, and for all children with rheumatic disease, and we're so proud of her.

Claudette Johnson: Hi. So I am one of a million kids living with pediatric rheumatic disease. Last year, CARRA decided to start a podcast, and they asked me to host it. I was very excited to take on the project. The idea was that if a kid is interviewing doctors, they will have to explain research in a way that is kid and PhD friendly.

Claudette Johnson: At CARRA's annual [00:03:00] meeting in New Orleans in 2023, I set out to interview lots of different people to find out what they would like to hear about on the new broadcast. The podcast has tackled a variety of topics, from an episode with Dr. Sun explaining how registry works for patients, to a two-part special series on mental health, looking at the challenges and some possible solutions.

Claudette Johnson: The podcast has helped raise awareness about pediatric rheumatic diseases and the need for research. It has also intrigued more people to CARRA. We'd love it if you would check out some of our CARRA podcast episodes. Thank you so much.

Claudette Johnson: When I finished, I had the honor [00:04:00] of interviewing Dr. Ardoin. How have you seen CARRA over the years changed the field that you have devoted your career to? Thank 

Dr. Stacy Ardoin: You know, I think about the fact that CARRA has been in my life since I was a fellow. And I sort of think of CARRA as like, BC, before CARRA and after CARRA.

Dr. Stacy Ardoin: And it's hard for me to imagine the BC days. I don't know if we're looking at this big audience we have. How many people here were there before CARRA? So these are our founders. And most of us have had the good fortune to have CARRA with us for all of our academic careers and patients and families.

Dr. Stacy Ardoin: And as well, and it's been extraordinary. Before that we didn't have a community, we didn't have these grant mechanisms, we didn't have the ability to collect these data on over 15,000 patients and collect long term outcomes, and it's just phenomenal to think about how far we've come. It's really amazing.

Claudette Johnson: Through the CARRA Podcast, I get to talk to a lot of researchers and there's so much exciting stuff going on, but from your [00:05:00] perspective, what do you think is the most exciting development in research? 

Dr. Stacy Ardoin: I would say I like to focus on what CARRA has done, and one of the things that I'm most excited about is that this incredible engine of the CARRA Registry, we're really poised to conduct really effective comparative effectiveness research, so we can finally answer questions about what drug worked best for which patient, which drug worked best for which conditions.

Dr. Stacy Ardoin: That is just so exciting and what we've all been striving for. With the collection of bio samples in the CARRA Registry, we're just beginning to really answer some very important questions, like for example, there are lots of questions that Dr. Li and team are looking at for scleroderma and the fundamental causes of scleroderma. We're also learning about the lung disease that accompanies systemic JIA, dermatomyositis, amongst others. 

Dr. Stacy Ardoin: Finally, there is this explosion of treatments that are available. We've had a lot of treatments for JIA, as everyone in the room knows. And we're starting to see an [00:06:00] explosion of treatments for conditions where we never really have experienced that before - so, lupus, dermatomyositis.

Dr. Stacy Ardoin: I really love the fact that we're excited about them, and we're not sure they're going to work as well as initially advertised. We certainly hope so, but it's really forcing us to change the conversation from living with disease with lots of medicines to potentially living free of disease without medicines. And that is just incredibly exciting to me. 

Claudette Johnson: You treat both kids and adults, so you're a special kind of rheumatologist. What kind of advice do you have for kids like me who are going to be navigating transition into adult care soon? And what should families focus on?

Dr. Stacy Ardoin: That's a good question. I think fundamentally I would say that knowledge is power. For young adults and teenagers, I think knowing about your condition is really important. Understanding your medications, knowing what they're for. Understanding the differences between the pediatric and adult health care systems, as you're soon to find out, is really important so you know what to [00:07:00] expect and how to navigate them. And really just learning from your community and your physicians are there to help you every step of the way. So, lean on us. Ask them lots of questions. 

Claudette Johnson: And last, we are recording tonight for a future podcast. So, for families who will listen to this episode and who will be hearing all about all this exciting research, how can they get involved and support the research?

Dr. Stacy Ardoin: Yeah, so there's so many ways to get involved. First is, of course, to be a patient and a family and participate in the Registry. The other thing is just to share the good word about CARRA and all the work it's doing and supporting it. Also, you can participate in the workgroups and committees to help us answer these important questions. So, there are so many ways to get engaged. And listen to the CARRA podcast, of course. 00:08:00] 

Claudette Johnson: Making this virtual connection through this podcast is wonderful. But seeing the organization in person is a reminder of how hard people are working to make life better for patients and their families. I walked away with the feeling that we really are all in this together. And when the announcement was made that we had enrolled 15,000 patients in the CARRA registry, I might have cheered the loudest.

Claudette Johnson: If you want to get more involved with the work of CARRA, head to the website. If you have a topic for an upcoming episode, head over to our podcast page on the CARRA website and leave us a message through a SpeakPipe link. We might play your voice on a future show, and we'll do our best to answer your questions.

Claudette Johnson: Finally, we encourage you to share The CARRA Podcast with friends, patients, and anyone else interested in learning more about the incredible work of the CARRA community, dedicated to creating a world free of limitations for children with rheumatic disease. This episode was produced and edited by Mason Lippman.

Claudette Johnson: Our music is by Jonathan M. Horner. [00:09:00] Thank you for listening.