Families living with childhood lupus have powerful allies in LADA and CARRA.

The Lupus and Allied Diseases Association, Inc. (LADA) and the Childhood Rheumatology Research Alliance (CARRA) have a research partnership and a shared commitment to advancing childhood lupus research, from discoveries that could pave the way for targeted therapies to new approaches to managing the mental health challenges that often come with this complex, chronic disease.

A national patient-led advocacy organization, LADA is dedicated to enhancing lives by empowering individuals impacted by lupus and allied diseases, promoting unity in the community, fostering collaboration among stakeholders and ensuring that the patient perspective is included and recognized as an equal voice in the healthcare, regulatory, and public policy arenas and across the research continuum.

Lupus is a life-threatening, chronic disease. An autoimmune disease, lupus causes inflammation throughout the body, affecting the skin, joints, and organs like the kidneys, lungs, and heart. Lupus can cause permanent organ damage.

In children, lupus is often more aggressive and more severe than it is in adults. The disease can have serious long-term effects on a child’s quality of life and growth, quality of life, and even how long they live. Families and their doctors still have many unanswered questions about childhood lupus.

LADA has been a longtime partner of CARRA in supporting childhood lupus research and in striving to address the challenges that matter to children and families living with lupus.

“We are honored to support CARRA researchers as they work to advance the understanding of childhood lupus and improve the future of care for young people with lupus so that they can achieve their goals and live out their dreams,” said LADA President and CEO Kathleen A. Arntsen. “One in five individuals with lupus develops the disease as a child, and pediatric research continues to be extremely important to our community.”

LADA is currently helping fund two important research initiatives that will have a major impact on the lupus community.

Unlocking answers about molecular subtypes of cSLE

The first study is using molecular profiling to better classify and treat young people with childhood Systemic Lupus Erythematosus (cSLE). The research is led by Linda Hiraki, M.D., Sc.D., of The Hospital for Sick Children, with Laura B. Lewandowski, M.D., M.S., of the National Institutes of Health, serving as primary advisor.

Prior studies have shown that genetic differences can determine who will get lupus and which parts of the body are affected. This research builds on that knowledge. Key elements of this work include:

Whole genome sequencing — Hiraki was part of a team of researchers who successfully performed short-read whole genome sequencing on more than 200 cSLE participants in the CARRA Registry in 2022.

RNA sequencing — These participants also have RNA samples in CARRA’s biobank, so researchers can perform RNA sequencing to discover more about which genes are expressed or suppressed at different times.

Integrating genetic + clinical data — Researchers will pair RNA and genetic data with detailed clinical information to create a more complete picture of disease pathways.

“Our goal is to define molecular subtypes of cSLE and identify pathways that can ultimately guide more precise, targeted therapies for young people living with cSLE,” said Hiraki and Lewandowski. “We are grateful for LADA’s support in helping us advance this research.”

RNA sequencing is costly, which limits the number of participants in a study. LADA’s support is making it possible to include more people in molecular profiling — better reflecting the diversity of the lupus patient population. Lupus affects more African Americans, Asian Americans, Latinos, and American Indians than it does Caucasians.

Understanding how childhood trauma affects young people with lupus

LADA is also supporting research related to the mental health of young people with cSLE. Mental health research is important to the lupus community, as the disease is associated with psychological stress and mental health problems are not uncommon. One-third of young people with cSLE have a psychological disorder such as depression or anxiety, which is higher than rates in the general population.

The research, “Enhancing Understanding and Care for Youth With cSLE Experiencing Adverse Childhood Events,” is led by Natoshia Cunningham, Ph.D., of Michigan State University; Andrea Knight, M.D., MSCE, of The Hospital for Sick Children; and Tamar Rubinstein, M.D., M.S., of The Children’s Hospital at Montefiore Einstein.

The study aims to enhance understanding and improve care for individuals with cSLE who face traumatic experiences, such as neglect, abuse, violence, and problems at home. These experiences are known as adverse childhood events (ACEs). Many kids with lupus and other rheumatological conditions experience ACEs. This in turn may make them more vulnerable to mental health and physical health impacts, and there is even research potentially linking ACEs to the development of rheumatological disease, explained study investigators Cunningham, Rubinstein, and Knight.

“We are grateful that LADA recognizes how important it is to understand the impact of ACEs on pediatric rheumatological populations, such as youth affected with cSLE, and to develop tailored interventions to support such youth with complex medical conditions and unique behavioral healthcare needs,” said Cunningham, Rubinstein, and Knight. “With support from LADA, we are studying the impacts of ACEs on physical and mental health outcomes for youth with cSLE, both concurrently and over the long-term, and are developing and testing a tailored approach to care.”

Key components of this work include:

TEACH intervention — A weekly, six-session remote program using cognitive behavioral therapy (CBT) to manage depressive symptoms, fatigue, and pain.

Evidence of effectiveness — Researchers found TEACH to be feasible and effective in managing symptoms of depression and fatigue (compared to standard care) in a recent trial.

Department of Defense support — Researchers were funded by a Transformative Vision Grant Award to integrate TEACH into clinical care in partnership with an advocate from LADA.

The study will advance our understanding of how childhood adversity affects mental and physical health for individuals with cSLE. It will also help doctors and psychologists provide more effective care for them.

In 2025, researchers attended the U.S. Association for the Study of Pain Annual Meeting and CARRA’s Annual Scientific Meeting to share preliminary results, which were published in The Journal of Pain. The findings, so far, suggest that while ACEs are prevalent among young people with cSLE, psychological treatment may reduce fatigue, depression, and anxiety symptoms.

LADA’s long-standing commitment

The molecular profiling initiative and the psychological interventions for young people with cSLE
are just a couple of the ways that LADA supports research in addition to the organization’s core mission. For nearly 50 years, LADA has been providing education, support, and outreach services for people impacted by lupus and allied diseases while wielding the patient voice as a catalyst to advance awareness, advocacy, and research initiatives. Learn more about LADA.

CARRA + LADA: A Partnership That Powers Progress

CARRA is proud to collaborate with LADA in driving forward innovative, patient-centered research that improves the lives of children living with lupus.