Listen to the podcast here and check out some highlights of their conversation below!
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) is a collaborative research network that was created in 2002 by a small group of dedicated physicians working in pediatric rheumatology. From the very beginning, they partnered with patients and families at every stage of research.
Today, CARRA has 600 members at more than 120 institutions and has built the largest observational multi-center Registry for pediatric rheumatic disease.
In this first episode of The CARRA Podcast, Claudette Johnson sits down with Dr. Yukiko Kimura, M.D., one of the founders of CARRA, to learn more about how CARRA has been a trailblazer in patient-centered research, while also supporting the field of pediatric rheumatology. Dr. Kimura is a board-certified pediatric rheumatologist and the division chief of pediatric rheumatology at Hackensack Meridian Health in New Jersey.
What did pediatric rheumatology look like when you first graduated medical school?
Pediatric rheumatology was in a pretty sad state when I finished my fellowship in pediatric rheumatology. It was an exciting time but also kind of a very desperate time for pediatric rheumatology because we were starting get access to new medications that were about to change how pediatric rheumatology patients were going to be treated. However, we really needed to do research in children about these medications and about our diseases.
At the same time, our specialty was really in a lot of trouble in the late 1990s. At the time, less than half of pediatric rheumatology patients were being cared for by a pediatric rheumatologist. The rest were being cared for by their pediatricians, internists, family doctors and adult rheumatologists, so they weren’t getting optimal care.
We were really not expanding as a specialty. In order to expand as a specialty, we have to train more people to become pediatric rheumatologists through a special training program. After they do a pediatric residency training, they have to go through pediatric rheumatology fellowship training. At the time, I think more than a third of medical schools in the United States, didn’t have even one pediatric rheumatologist on their faculty. Believe it or not, at that time, less than 10 fellows a year were graduating across the whole of the United States.
We had a lot of questions as pediatric rheumatologists, but it was really hard to do research because we didn’t have enough people or manpower take care of patients and also work towards answering these questions.
Let’s talk about the beginning of CARRA. Why do you think we needed CARRA, and what was your goal for the organization as a whole?
A big reason for starting CARRA was that we really had, as pediatric rheumatologists, a lot of questions about our diseases and also about how to treat them well and how to achieve the best outcomes for our patients.
You know, the diseases are pretty rare, so when you are at one center, even if you have a lot of pediatric rheumatologists there, you don’t really see enough patients in any one place to be able to have enough of a core of patients that you can get meaningful information and data.
from. Although there were some studies that were being done in pediatric rheumatology at the time, they were really just focused on getting medications approved for use in pediatrics, specifically in juvenile idiopathic arthritis (JIA).
Pediatric rheumatologists all around the country realized that there are so many other questions that we really need to answer, but we had no way to answer them because it was so hard to do research individually. We realized that we needed to come together as a group and collaborate with each other to be able to do research so that we could put all of our patients together and think about the questions we want to ask and get funding to be able to do research to answer these questions.
Let’s shift to 2023. How would you describe the organization’s current mission in pediatric rheumatology?
The mission of CARRA is to do collaborative research to prevent, treat, and cure pediatric rheumatic diseases. We are really a research organization that is focused on understanding all the different pediatric rheumatic disease and understanding, why they exist, how to treat them the best way, and eventually, how to cure them.
How far is CARRA’s reach today in terms of clinical research in rheumatic diseases?
We are a research organization that is based in the United States and Canada. We have over 120 sites and virtually all the pediatric rheumatologists in the United States and Canada are members. We also have a site in Israel that we are collaborating with, as well as other pediatric rheumatology organizations and research organizations internationally so we do research together globally now. We’re very excited that we have a new research project called SMART-JIA, which was just funded by PCORI (Patient-Centered Outcomes Research Institute) in which we’re going to do just that. We’re going to have sites within CARRA, and we’re also collaborating with the Pediatric Rheumatology European Society (PReS) and PRINTO (Pediatric Rheumatology International Trials Organization) to enroll patients from all over the world to answer questions about how to treat JIA optimally.
Do you feel that your initial goals for the Childhood Arthritis and Rheumatology Research Alliance are coming to fruition?
There are always challenges, but CARRA has really progressed incredibly quickly, over the last, 10 years or so. We started as an organization that didn’t really have any funding to do research, and we have grown tremendously. We have a registry now that has over 13,000 patients in it, from which we’re learning so much and through which we’re conducting many types of research studies – from observational research where we just look at data that we collect from all the patients that we see in our clinics to doing interventional research where we actually treat patients in novel ways to see whether it can be helpful, to doing translational research where we collect samples from the patients we treat and look for things like biomarkers or genetic markers that can help us answer some of the questions that we have about these pediatric rheumatic and related autoimmune diseases.
What are you most excited about where research is headed in pediatric rheumatology and pediatric rheumatic diseases?
There are a lot of new directions in pediatric rheumatology research that I’m really excited about. The fact that we are now able to work together as a global community of researchers is one. We talked initially about how we were so limited in terms of research because we didn’t have enough patients at any individual site or center. We worked to make it a North America wide effort, and now we’re able to collaborate globally with pediatric rheumatologists around the world. I think that that is incredibly exciting and really the way that we need to go in order to be able to help our patients the most.
The other thing that CARRA really has brought to the forefront is that we need to engage patients and their families in our research efforts. That is something that really has become embedded within CARRA. We need patients and families to guide us towards the questions that we need to ask and that are important to them because that is the point of our research — to improve the lives of the patients that we take care of.
I’m really proud that CARRA has led the way in pediatric rheumatology research, while making sure that patients are involved in every aspect of the research that we do. This begins with conceptualizing our research projects with the questions that patients and families have in our disease research committee meetings and work group meetings. Patients and families are also involved when the protocols are developed and when we operationalize the study and recruit patients into the study. Patient partners are engaged every step of the way and it is critical to the success of research to be able to do that. I’m really proud that CARRA has always done this.
What is the one thing that you want pediatric rheumatology patients to know about how CARRA can help make a difference in their lives?
I think that the message is – actually, there’s a video about this – that research is hope.
It’s hope for your child and hope for you, that research will make everyone’s lives better and get us towards our goal of being able to cure the diseases that we take care of. We want patients and their families to partner with us every step of the way because that is how we achieve our goals together and faster.
About Dr. Yukiko Kimura
Dr. Kimura is a board-certified pediatric rheumatologist and the division chief of pediatric rheumatology at Hackensack Meridian Health in New Jersey. Dr. Kimura provides clinical care for children, teens and young adults with arthritis, lupus, vasculitis, dermatomyositis and other rheumatic diseases. In addition, she has a strong interest in clinical research, and she is one of the founders of the collaborative research network called CARRA (Childhood Arthritis and Rheumatology Research Alliance). Her clinical and research specialty is in juvenile idiopathic arthritis (JIA), especially a type called systemic JIA.
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 Emily Nguyen
Emily is a Sophomore at New York University studying Film and TV Production. She was diagnosed with Lupus Nephritis at age eight. Since her diagnosis 12 years ago, Emily has been a lupus advocate—raising money, spreading awareness and supporting other patients afflicted by the disease. In her free time, she enjoys creating films, painting, baking and traveling.
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