For kids managing a rheumatic disease, school can be a frustrating cycle of missed lessons and makeup work. While a 504 Plan for special accommodations can certainly help, families living with pediatric rheumatic diseases know that school-related challenges are inevitable.

There is very little evidence about the burden of school-related issues and the exact barriers that kids with pediatric rheumatic diseases face.

Mia Chandler, M.D, M.P.H, a pediatric rheumatologist at Boston Children’s Hospital, aims to change that. Last year, Dr. Chandler won a CARRA-Arthritis Foundation Career Development Award to support her research into Juvenile Idiopathic Arthritis and School-Related Concerns. Her research will assess the burden of school-related concerns – beyond physical and academic challenges to include social and psychological issues.

Learn more about her important research and the challenges that kids face at school in this special episode of the CARRA Podcast.

This episode focuses on scleroderma, a disease that the host of the CARRA Podcast was diagnosed with at nine years old. To help explain what the disease is all about, we turn to Dr. Kathryn Torok, Associate Professor of Pediatrics and Clinical and Translational Science. Dr. Torok is the director of the Pediatric Scleroderma Clinic at UPMC Children's Hospital of Pittsburgh, where she is also the co-director of the Pediatric Craniofacial Scleroderma Clinic.

Dr. Torok explains the different types of scleroderma and how doctors diagnose them, as well as the possible treatment options and the challenges that patients and physicians face with this rare disease. As a leading researcher in pediatric scleroderma who co-leads CARRA's Scleroderma Workgroup, Dr. Torok also shares the latest exciting updates in her scleroderma research.

Have you ever wondered what it’s like to be a kid with a rare autoimmune disease?

In this special episode, the host of The CARRA Podcast, who is a teenager living with a rare autoimmune disease, interviews another teenager who has a rare autoimmune disease about their experiences with school, sports, friends, and medical treatments. They also share their frustrations, hopes and new perspectives on life.

Spencer Ableman shares his journey with vasculitis, from a terrifying and unexpected health crisis to accepting this tough diagnosis and learning to embrace life with new challenges. Spencer, who has an incredibly optimistic outlook, has a story that is both informative and uplifting.

Spencer shares his experiences on everything from competing in a cross-country race with a port in his chest to explaining his condition to other teenagers. It hasn’t been an easy path, but he has found some silver linings – from having insider knowledge in his AP Bio class to seeing his friends waiting at the finish line of his first cross-country race.

“Even though it may seem like you're in the dark there's a light at the end of the tunnel and you just got to keep your head up if you want to see it,” says Spencer.

These two remarkable teens, who met at CARRA’s Annual Scientific Meeting, discuss what research means to them and why they are involved with CARRA.

Kids with rheumatic and autoimmune diseases rates are at greater risk of developing anxiety and depression.

In a special two-part series on mental health and mental health awareness, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health issues.

In this second episode on mental health, we explore how researchers are working to provide better support to children and teens living with rheumatic and autoimmune diseases.

The CARRA Podcast host, Claudette Johnson, sits down with Dr. Andrea Knight to learn more about what is being done to help kids cope with mental health challenges. Dr. Knight is a Clinician-Investigator in the Division of Rheumatology and Associate Scientist in the Neurosciences and Mental Health program at The Hospital for Sick Children (SickKids) in Toronto. She is also the Chair of the Systemic Lupus Erythematosus (SLE) Committee for CARRA.

Dr. Knight got interested in mental health early in her career when she saw many teenagers struggling with adjusting to their diagnosis, whether it be arthritis or lupus. Those early experiences shaped her interest in mental health research for kids and teens with pediatric rheumatic diseases.

The initial focus of Dr. Knight’s research was to examine the prevalence of mental health issues among patients, particularly young adolescents with lupus. She wanted to see how common symptoms such as depression, anxiety, and thoughts of self-harm were.

Her findings revealed that these symptoms were quite common among adolescents with lupus, raising concerns about the extent of the issue. This study underscored the need to develop tailored interventions to support adolescents with lupus in managing their mental health.

That first study was about 10 years ago, and Dr. Knight is pleased that things have improved since then.

The CARRA community, rheumatologists, patients and parents, mental health providers, and other researchers are really talking about mental health as an important issue – and that wasn't happening 10 years ago.

One of the things that CARRA as a community has made strides with is doing research into mental health and supporting researchers to really get at the important issues, Dr. Knight explained.

The other thing that's come out of the work of the CARRA community is that they have developed a research agenda for mental health to guide them on how to continue to study mental health with the big goal of improving mental health care for patients and for their families.

Dr. Knight was also involved with a big anonymous survey of patients and their families about mental health called the “Partner Survey.” Researchers partnered with patients and caregivers to help develop the survey and to lead the study alongside the researcher team.

The patient and caregiver voices are really critical not only to lead the research and find out what the problems are, but also to make sure that whatever is being developed is actually going to result in a relevant and significant improvement in the lives of patients and their families.

Dr. Knight also discusses strategies that are being implemented to help young patients cope with mental health issues.

For example, social workers can help with some of the mental health care services, as many of them have training to offer counseling.

Another strategy that people are utilizing is to have psychologists as part of the rheumatology team. Dr. Knight explains this is an excellent approach because the psychologists are able to learn about the common struggles that young patients with rheumatic conditions might be facing, and then help them to deal with them in the context of their rheumatology care.

Listen to the podcast to learn more about these possible solutions to mental health challenges in young patients with rheumatic and autoimmune diseases.

It's no secret that mental health challenges are on the rise for children and teenagers, but imagine being a kid with a complex, chronic health condition.

In a special two-part series on mental health, The CARRA Podcast explores how kids living with autoimmune diseases can face additional mental health challenges. The first episode takes a look at this pervasive problem, and in the second episode, we’ll have a conversation about solutions and examine what is being done to help kids and teenagers.

The CARRA Podcast host, Claudette Johnson, explores how doctor’s appointments, treatments, endless tests, and medications are part of daily life for kids with a rare autoimmune diseases. Missing school, sitting out from sports, not having friends who understand the child’s condition can be lonely and mentally challenging – on top of the struggles every kid and teenager faces.

In Mental Health - Part One, Claudette talks with a pediatric psychologist who is focused on helping kids living with pediatric rheumatic diseases. Dr. Alana Goldstein Lever is a team psychologist in the Department of Rheumatology, where she works with children, teens, and young adults with rheumatic diseases. She is also an assistant professor at the Ohio State University.

Dr. Goldstein Lever explains how and why mental health issues, such as depression and anxiety, are on the rise in young people and why kids with pediatric rheumatic disease face additional challenges that can strain their mental health, such as medication side effects and physical limitations like missing recess or sports. They also may feel lonely or isolated due to living with a rare condition that their friends have never heard of and don't know how to pronounce.

This episode also examines the intersection of chronic illness, physical limitations, pain, and treatment challenges.

Dr. Goldstein Lever and Claudette Johnson discuss how there is an increasing recognition of these very significant issues facing young people and of the importance of mental health overall.

For example, Nationwide Children's Hospital has a campaign called “On Your Sleeves,” which focuses on really giving a voice to mental health issues. The hospital also has an innovative program where Dr. Goldstein Lever serves in a full-time role as the team psychologist in the Department of Rheumatology.

Want to learn more about CARRA?

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) was started by a small group of dedicated physicians working in pediatric rheumatology. CARRA was established with the mission to do collaborative research to prevent, treat, and cure pediatric rheumatic diseases.

Since the very beginning, CARRA researchers have partnered with patients and families at every stage of research.

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 in North America, which has over 13,000 patients. CARRA also operates two biobanks – one in the United States and one in Canada.

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

In this episode, you will learn what a registry is, the roles that registries play in research, and how patients and families can help support them.

In the second episode of The CARRA Podcast, Claudette Johnson talks with Dr. Mary Beth Son, who is the Co-PI of the CARRA Registry. Dr. Son is Clinical Chief of the Division of Immunology and Section Chief of the Rheumatology Program at Boston Children's Hospital, as well as an Associate Professor of Pediatrics at Harvard Medical School.

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) has the largest ongoing, observational registry in North America that collects clinical and patient-reported information about children and young adults with pediatric-onset rheumatic diseases. The CARRA Registry has more than 14,000 patients enrolled at 70 sites. It also serves as a biosample repository for select translational studies that leverage registry data.

The CARRA registry is a large registry, and it is used to study pediatric rheumatic disease. It has a lot of people participating and supporting it. At the moment, there are three main diseases that we collect data on, and that includes juvenile arthritis, lupus, and juvenile dermatomyositis. These are three of the more common diseases that we see in pediatric rheumatology clinics.

The real advantage of studying pediatric rheumatic disease in a registry is that these are rare diseases. We really want to be able to answer the kinds of questions that patients and their families have, but any one center has a very difficult time robustly answering questions about these diseases because they're rare. If you pool everybody in, then you're really able to study things and hopefully get to some meaningful answers for patients and their families.

Dr. Son also explains exactly how the registry works, what kind of information is collected and what the roles of patients and families are. She also explains the importance of biosamples in pediatric rheumatic disease research.

Claudette and Dr. Son tackle a wide variety of topics related to the registry, including AI and data privacy.

Learn more about the CARRA Registry and ongoing research using the registry and biorepositories.

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.