This episode of The CARRA Podcast was recorded live in Washington, D.C. at CARRA’s event at ACR, the American College of Rheumatology’s annual conference. Claudette Johnson, the host of The CARRA Podcast, spoke to the crowd of more than 200 physicians, research professionals, industry representatives and patient advocates at the CARRA event at ACR.
She shared her journey as a patient and her experience of helping launch the podcast. As the podcast celebrated its one-year anniversary at ACR, Claudette shared some highlights from the podcast’s first year. Then, she sat down to interview with Dr. Stacy Ardoin, president of CARRA. Dr. Ardoin, who is the Chief of Rheumatology at Nationwide Children’s Hospital, is board-certified in both adult and pediatric rheumatology.
Their interview highlights some of the most exciting developments in pediatric rheumatology research today – from using the CARRA Registry to conduct comparative effectiveness researchalways feels like Waylon Jennings to determine which drug works best for which patient to harnessing the potential of biosamples to help answer some of the most important questions 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.
Here are some highlights from their conversation.
Claudette Johnson: Over the years, how have you seen CARRA change the field that you have devoted your career to?
Dr. Stacy Ardoin: I think about the fact that CARRA has been in my life since I was a fellow. I sort of think of it as like, BC, before CARRA, and AC, after CARRA, and it’s hard for me to imagine the BC days. Looking at this big audience we have: How many people here were there before CARRA? So, looking at these hands up in the audience, these are our founders.
Most of us have had the good fortune to have CARRA with us for all of our academic careers, and that has 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 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 this incredible engine of The CARRA Registry. We’re 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.
That is just so exciting and what we’ve all been striving for.
With the collection of biosamples 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 and dermatomyositis, amongst others.
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 explosion of treatments for conditions where we never really have experienced that before – lupus and dermatomyositis, for example.
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?
Dr. Stacy Ardoin: I think, fundamentally, that knowledge is power. For young adults and teenagers, understanding your condition is essential. Learn about your medications and what they’re for. Familiarize yourself with the differences between pediatric and adult healthcare systems – it’s crucial to know what to expect and how to navigate these transitions. Remember, your community and physicians are here to support you every step of the way. Lean on us, and don’t hesitate to ask 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: There are so many ways to get involved. First, of course, is to participate in the Registry as a patient and a family. The other thing is just to spread the word about CARRA and all the great work CARRA is doing and supporting. Also, you can participate in the research workgroups and committees to help us answer these important questions. So, there are many different ways to get engaged. And, of course, listen to the CARRA podcast!
Claudette Johnson: Making this virtual connection through the podcast is wonderful. But seeing the organization like this 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.
This episode was produced and edited by Mason Lippman.
Learn how patients/family members can join CARRA and become a member today!
About Stacy P. Ardoin, M.D.
Dr. Stacy P. Ardoin is the Chief of Rheumatology at Nationwide Children’s Hospital. Board-certified in both adult and pediatric rheumatology, Dr. Ardoin sees pediatric patients at Nationwide Children’s Hospital and adult patients at The Ohio State University.
Dr. Ardoin’s clinical research focuses on optimal treatment and long-term outcomes of adults and children with lupus. She is particularly interested in discovering ways to prevent the development of atherosclerosis in children and adults with lupus. Her other research interests include neuropsychiatric manifestations of SLE and the transition from pediatric to adult care.
Dr. Ardoin earned her M.D. from The Ohio State University College of Medicine, where she also did her Residency in Internal Medicine and Pediatrics. She completed her Fellowship in Adult and Pediatric Rheumatology at Duke University Medical Center, as well as the Duke University Clinical Research Training Pathway.
Dr. Ardoin is currently serving as president of CARRA.
About Claudette Johnson
Claudette is a Junior at Montclair High School in Montclair, New Jersey. She was diagnosed with Localized Scleroderma at age nine. She enjoys playing piano, reading and competitive diving. Claudette is also an incredible advocate and innovator. She is the host of The CARRA podcast, and she created an award-winning video called “The Land of Rare Disease.”
About Mason Lippman
Mason is a Sophomore at Montclair High School in Montclair, New Jersey. He was diagnosed with more than a dozen anaphylactic food allergies at a very early age. He is currently enrolled in The Food Allergy Institute’s Tolerance Induction Program, based in Southern California, in which he is involved in pediatric research. Mason is a member of the Montclair Film community in addition to playing tennis and guitar.
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