What is the Childhood Arthritis and Rheumatology Research Alliance (CARRA)?

Meet a pediatric rheumatologist who helped pioneer collaborative research in pediatric rheumatic and related autoimmune diseases. 

Dr. Yukiko Kimura helped create a collaborative research network called the Childhood Arthritis and Rheumatology Research Alliance (CARRA) with 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. 

Learn about the growth of this pediatric rheumatology research organization and what the future holds for CARRA, as the organization continues to accelerate research and drive advances in evidence-based medicine, while also creating career development opportunities for pediatric rheumatologists.

In this first episode of The CARRA Podcast, Claudette Johnson sits down with Dr. Kimura 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 the division chief of pediatric rheumatology at Hackensack Meridian Health in New Jersey. 

Dr. Kimura explains how pediatric rheumatology was very different back in the late 1990s when she finished her fellowship in pediatric rheumatology than it is today. At the time, less than half of pediatric rheumatology patients were being cared for by a pediatric rheumatologist. More than a third of medical schools in the United States, didn't have even one pediatric rheumatologist on their faculty, and less than 10 fellows a year were graduating across the entire United States. 

It was very challenging to do research because there simply weren’t enough pediatric rheumatologists. 

A big reason for starting CARRA was that pediatric rheumatologists had a lot of questions about pediatric rheumatic diseases and how to achieve the best outcomes for their patients.

Pediatric rheumatologists around the country realized that there were so many questions to be answered, but they had no way to answer them. They realized that they needed to come together as a group and collaborate with each other to be able to do research.

Thus, CARRA was born with the mission to do collaborative research to prevent, treat, and cure pediatric rheumatic diseases and related autoimmune diseases. 

From humble beginnings in 2002, CARRA has grown into an extensive collaborative research network with 600 members at more than 120 institutions. CARRA has built the largest observational multi-center Registry for pediatric rheumatic disease, which has over 13,000 patients. CARRA also operates two biobanks.

CARRA members also work with other pediatric rheumatology organizations and research organizations internationally. 

CARRA has a research project called SMART-JIA, which was just funded by PCORI (Patient-Centered Outcomes Research Institute), to conduct international research. In addition to sites within CARRA, the study will involve collaborating with the Pediatric Rheumatology European Society (PReS) and PRINTO (Pediatric Rheumatology International Trials Organization) to enroll patients from all over the world.

Dr. Kimura emphasizes that CARRA really has brought to the forefront the importance of engaging patients and their families in research. That has become embedded within CARRA, and Dr. Kimura explains that they need patients and families to guide them towards the questions that matter to patients because that is the point research — to improve the lives of patients.

Learn how physicians can join CARRA and how patients/family members can get involved with CARRA. 

Transcript

What is the Childhood Arthritis and Rheumatology Research Alliance (CARRA)?

Episode One of The CARRA Podcast

Claudette Johnson: Welcome to a new podcast from CARRA. The Childhood Arthritis and Rheumatology Research Alliance. We are doctors, researchers, and patients, all working together to prevent, treat, and cure pediatric rheumatic disease.

In each episode, we will interview a member of the CARRA community to hear research updates, explore new ideas, and learn how we can all work to create a world [00:01:00] free of limitations for children with autoimmune and autoinflammatory disease. I'm your host, Claudette Johnson, and this is The CARRA podcast.

This spring, I made my way to New Orleans for the annual CARRA conference. After many beignets and some jazz in the park, I roamed the conference with my phone to ask a simple question. What topics would you like us to cover in this new podcast? We heard from patients like me, as well as their families, doctors, and researchers.

Taking all these ideas on board, we thought for this first episode, it would be good to start at the beginning. What is CARRA? What is this organization all about? What are its goals? And how can patients and their families contribute to its mission? With this in mind, we reached out to Dr. Yukiko Kimura, the Division Chief of Childhood Rheumatology at Joseph M.

Sanzari Children's Hospital [00:02:00] in Hackensack, New Jersey. Dr. Kimura treats children, teens, and young adults with arthritis, lupus, vasculitis, JDM, and other diseases, all while conducting clinical research. And in 2002, Dr. Kimura helped found CARRA. Dr. Kimura, thank you for joining us. 

Dr. Yukiko Kimura: Oh, thank you for inviting me to come talk to you.

Claudette Johnson: So, take me back to when you first graduated medical school. What did pediatric rheumatology look like then? 

Dr. Yukiko Kimura: Well, actually pediatric rheumatology was in a pretty sad state when I graduated. Actually, when I, this is even further down the line, when I graduated from medical school, and then grad did my residency and then finished my fellowship in pediatric rheumatology.

You know, it was, actually an exciting time and also kind of a very desperate time for pediatric rheumatology because, you know, we were starting to [00:03:00] get access to new medications that were really about to change how pediatric rheumatology patients were being, were going to be treated. But 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. This was in the late 1990s. And, you know, less than half of pediatric rheumatology patients were being cared for by a pediatric rheumatologist. The rest were being cared for by their pediatricians, by their internists, family doctors and adult rheumatologists, so they weren't getting optimal care.

At the same time as that, we were really not expanding as a specialty. So, 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, pediatric, residency training. They have to go through pediatric rheumatology [00:04:00] fellowship training.

And, believe it or not, at that time, less than 10 fellows a year were graduating, you know, across the whole of the United States. We had a lot of questions. But we didn't have enough people or, you know, manpower, to see the patients and to answer these questions. And it was really hard to do research.

Claudette Johnson: Now this wasn't that long ago, why do you think that the field was so small? 

Dr. Yukiko Kimura: The field is still pretty small and we still need, more pediatric rheumatologists. But I think at the time it was even more dire just because, there was so little exposure to pediatric rheumatology in medical school.

And in residencies, to get people interested in, in pediatric rheumatology. You have to have people who are practicing pediatric rheumatology so they could see the kind of work that we do and to [00:05:00] understand the diseases and to be able to care for patients with pediatric rheumatology diseases.

At that time, I think more than a third of medical schools in the United States, didn't have one pediatric rheumatologist on their faculty. So, if you don't get exposed to it, you don't get interested in it, right? So that was part of the problem.

Claudette Johnson: Why did you personally want to go into this field of medicine? 

Dr. Yukiko Kimura: Hmm, well, that's a good question. I became interested in, actually rheumatology when I was a medical student because I was exposed to some really, interesting and wonderful patients who are very difficult to diagnose when I was going through my medicine training and pediatric training. And I thought that it was just, you know, kind of a fascinating specialty where you could really help [00:06:00] people.

 with diseases that, you know, most doctors didn't understand and didn't understand how to treat. I was lucky enough when I was doing my pediatric training in residency after medical school to be at a place where there was one of the pioneers in pediatric rheumatology, whose name was Jerry Jacobs, who, exposed me to this, wonderful world of, pediatric rheumatology. And I thought, “how great would it be to be able to provide care and to be able to help, kids with these diseases?” Because at that time, nobody really knew what to do. 

Claudette Johnson: Let's talk the beginning of CARRA. You're one of the founders of this organization. Why do you think we needed CARRA? What was your goal for the organization as a whole? 

Dr. Yukiko Kimura: Well, like I said, I think a big reason for CARRA starting was that, we really had, as pediatric rheumatologists, a lot of, [00:07:00] questions, about our diseases and also how to treat them well and how to achieve the best outcomes for our patients.

And, you know, the diseases are pretty rare in and of itself. And 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. So, 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 J. I. A. And it was sponsored by a pharmaceutical company who was trying to get this, on the market.

These were very important studies that, were being, conducted, [00:08:00] and the Pediatric Rheumatology Collaborative Study Group, or PRCSG, was a research network that was really working with companies to do these. You know, the pediatric rheumatologists all around the country realized that there are so many other questions that we need to answer, but no way to answer them because it was so hard to do research and 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 in one big database, so to speak, so that we were able to think about the questions and try to answer them and get funding for our research.

Claudette Johnson: So, you wanted to create a community where information about treatments and outcomes among these rare patients can be shared?

Dr. Yukiko Kimura: Yeah, sharing is important, but also we wanted to actually work [00:09:00] together to say, you know – these are the important questions that we want to answer. And, how do we answer them? What are the kinds of research studies that we need to do? And how do we get the funding to be able to answer these questions? That's kind of why CARRA started. We needed to put together a network that many pediatric rheumatology centers could participate in and where we would be able to do research together to answer our questions.

Claudette Johnson: Let's shift to 2023. How would you describe the organization's current mission? 

Dr. Yukiko Kimura: The mission of CARRA is to do collaborative research to prevent, treat, and cure pediatric rheumatic diseases. So, that's kind of a broad overview of what CARRA is trying to do. We are really a research organization that is focused on understanding All the different [00:10:00] pediatric rheumatic diseases and understanding why they exist, how to treat them the best way, and eventually, how to cure them.

Claudette Johnson: How far is CARRA's reach? I understand it's international.

Dr. Yukiko Kimura: Well, we are a research organization that really is based in the United States and Canada. We have over 120 sites, and virtually all the pediatric rheumatologists in the United States and in Canada are members.

We also have a site in Israel, and we are collaborating with other pediatric rheumatology organizations, research organizations, internationally to do research together now. And actually, we're very excited that we have a new research project called SMART JIA, which was just funded by PCORI,[00:11:00] , in which we're going to do just that.

We’re going to have sites in CARRA, and we're also collaborating with the Pediatric Rheumatology European Society called PRESS and also PRINTO, which is a Pediatric Rheumatology International Trials Organization to, enroll patients from all over the world to answer questions about how to treat JIA optimally.

Claudette Johnson: Do you still feel that your initial goals for CARRA are coming to fruition or are there any big challenges that you're facing making this goal? 

Dr. Yukiko Kimura: Well, there are always challenges, but CARRA has really progressed incredibly quickly over, I would say, the last 10 years or so. I mean, we, we started, as an organization that didn't have any funding really to, to do research.

We did get some infrastructure funding from the Arthritis Foundation [00:12:00] and the Wasie Foundation and the National Institutes of Health gave us money to put meetings together so that we could talk about our research. From there, you know about 10 years ago onward, we've really 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 what we call observational research where we just look at data that we collect from all the patients that we see in our clinics to doing what we call interventional research where we actually treat patients in novel ways to see whether it can be helpful to doing translational research, in which we collect samples from those, the patients that we treat and look for things like biomarkers or genetic [00:13:00] markers that can help us answer some of the questions that we have.

Claudette Johnson: So, we've spoken a lot about the past and the present. But for the future, where do you, what are you most excited about where research today in pediatric rheumatology is heading? 

Dr. Yukiko Kimura: I think that there are a lot of new directions in pediatric rheumatology research. I'm really excited about the fact that we are now able to work together as a global community. 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 to making 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 [00:14:00] to be able to help our patients the most. The other thing I think that CARRA really has brought to the forefront that is really important is that we need to really 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, right, is to, to improve the lives of the patients that we take care of.

And I'm really proud that you know, CARRA really has led the way in pediatric rheumatology research, making sure that patients are involved in every aspect of the research that we do from conceptualizing our research projects with the questions that they have, and that we involve patients at the point [00:15:00] of meeting conceptually about these research questions at CARRA disease research committee meetings and work group meetings.

We also involve them at the time that we actually put in funding applications and writing the funding applications. And as well as when the protocols are developed and when we operationalize the study and we try to recruit patients into the study. You know, I think patient partners are involved every step of the way and it is critical to the success of research to be able to do that.

So, that's something that I'm really proud that CARRA does.

Claudette Johnson: What is the one thing that you want patients to take away from CARRA that you can tell them that this can help make a difference in their lives? 

Dr. Yukiko Kimura: Well, I think that the message is – actually, there's a video about this – that research is [00:16:00] hope.

It's hope for your child and hope for you, that research will make everyone's lives better and get towards the 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.

Claudette Johnson: Dr. Kimura, thank you for joining us. 

Dr. Yukiko Kimura: You're welcome. 

Claudette Johnson: So, I just wanted to ask one more bonus question. What is something that you love to do when you are not working? 

Dr. Yukiko Kimura: Oh, I like to do a lot of things when I'm not working. Um, and a lot of times I don't have time to do them all. But, one thing I always want to make sure I have time for is cooking.

Actually, I love, I love cooking. I love food. And like learning about foods from all over the world.[00:17:00] I enjoy making food for myself and my family and my friends, so I try to make time to do that as much as I can. And, my daughter became a food writer and editor. My son is a doctor, but he still also likes to cook a lot.

Claudette Johnson: Perfect. 

Dr. Yukiko Kimura: Thank you.

Claudette Johnson: The CARRA Podcast wants to hear from you. 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. 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 podcast is produced and edited by Emily Nguyen. Our [00:18:00] music is by Jonathan M. Horner. Thanks for listening.