Pediatric Lupus Research Grant Recipients
Pediatric lupus grants under the Michael Jon Barlin Pediatric Lupus Research program provide funding for research projects that have the potential to significantly advance the field of or impact the lives of children living with lupus and their families.
2023 Pediatric Lupus Research Grant Awardees
Joyce Chang, MD, MSCE
Children's Hospital of Philadelphia
Title of Project
Functional properties of the prefrontal cortex and cognitive dysfunction in childhood lupus
About the Researcher
Dr. Joyce Chang is an Assistant Professor of Pediatrics at Harvard Medical School, Director of Lupus Research at Boston Children's Hospital (BCH) and PI of the BCH Lupus Registry. She is a clinical investigator with a focus in long-term outcomes and cardiovascular complications of childhood-onset systemic lupus erythematosus (cSLE). Dr. Chang has specific expertise in the application of non-invasive imaging, pharmacoepidemiology, and interdisciplinary research collaborations. She graduated from Harvard College in 2008, received her medical degree from the University of Pennsylvania, and went on to complete pediatric residency and pediatric rheumatology fellowship at The Children's Hospital of Philadelphia (CHOP). Dr. Chang completed an additional year of post-doctoral research training funded by an NIH F32 individual training grant and Lupus Foundation of America Career Development Award to study cardiovascular disease in cSLE and build interdisciplinary collaborations with pediatric and adult cardiology researchers. Her current research focuses on addressing highly relevant clinical issues for pediatric patients with cSLE.
Project Summary
Cognitive dysfunction is a feature of brain involvement in childhood-onset systemic lupus erythematosus that remains poorly diagnosed and undertreated. Symptoms of cognitive dysfunction may include problems with memory, attention, or brain fog, which negatively affect school functioning, peer relationships, and lifelong health-related quality of life. We currently lack the necessary tools to diagnose cognitive dysfunction or study the biologic processes underlying these symptoms. Functional near-infrared spectroscopy (fNIRS) is a non-invasive brain imaging tool that can be used to measure brain activity. Unlike brain magnetic resonance imaging (MRI), it is portable and can be done easily in an office setting. However, this tool has never been tested in children with lupus. In this project, we will assess whether use of fNIRS is feasible and acceptable to children with lupus and their caregivers. We will also generate new data about how patterns of brain activity on fNIRS relate to neurocognitive testing results. The new knowledge generated from this project will support larger studies of brain function in children with lupus so that we can better understand how to diagnose and treat brain involvement.
Cuoghi Edens, MD
University of Chicago
Title of Project
What about when I grow up? The Fertility Goals and Concerns of Teens and Young Adults with Childhood-onset Systemic Lupus Erythematosus (cSLE)
About the Researcher
Cuoghi Edens, MD, is both a board-certified adult and pediatric rheumatologist at the University of Chicago where she is currently an Assistant Professor. Dr. Edens treats children and adults suffering from a wide array of rheumatic and autoimmune diseases. Her clinical and research passion, however, lies in the interplay between the pregnancy, sexual health, contraception, and rheumatic diseases across the age spectrum. Due to her combined adult and pediatric rheumatology training, her clinical practice also focuses on teens and young adults diagnosed with rheumatic diseases and their healthcare transition into adult-centered care. She is active in the American College of Rheumatology Reproductive Health Initiative and the co-leader of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Reproductive Health Work Group, as well as an Executive Committee Member American Academy of Pediatrics Section of Rheumatology. She is a national leader in reproductive health and rheumatology research across the age spectrum. She is a strong advocate for pediatric rheumatic diseases, rheumatology medical education, and reproductive health knowledge and access. Aside from her clinical work and research, Dr. Edens is also the pediatric rheumatology fellowship director at the University of Chicago and involved in medical student and resident education.
Project Summary
Lupus affects many aspects of a women's reproductive and sexual health, with pregnancy being the most recognized and well-studied. However, becoming successfully pregnant with lupus can have many challenges, highlighted by the fact that women with lupus have less children compared to other women. Lupus pregnancies are more successful when planned so safe medications can be prescribed and a patient's disease activity is low, but this can cause a delay to conception. Inflammation from lupus and medications used to treat lupus can contribute to women having a hard time becoming pregnant, known as infertility. Many with lupus have antiphospholipid antibodies which increase the risk of pregnancy loss and other complications. Twenty percent of adults with lupus are actually diagnosed before the age of 18. Theoretically these lupians may have their family planning goals and pregnancy attempts more greatly impacted due to their longer disease duration and statistically more severe disease activity meriting more aggressive treatment. Desire for future children, concern for lupus' impact on fertility, and barriers to child-bearing have not been investigated in those whose lupus was diagnosed as a child or teen.
Dr. Edens and her research team of Drs. Kimberly Hays, Kristine Carandang, Mehret Birru-Talabi, Amber Truehart and Brittany Huynh will conduct three focus groups: Teens with childhood-onset lupus, young adults with lupus diagnosed in childhood, and the parents of teens and young adults with childhood-onset lupus. Interviews of these groups will focus on their family planning goals and the impact lupus has on this and the concern they have about their ability to have children as a pediatric lupus patient, as well as the healthcare conversations they have had around pregnancy, infertility and family planning. Knowledge and use of fertility preservation methods will be evaluated. Current sources of this information with be investigated and resource preference assessed. The data obtained will provide foundational information to improve patient and parent educational resources around the topic of future family planning and infertility, specifically for those diagnosed with lupus as children. Pediatric rheumatologists will also be impacted by the outcomes of this study as they are a sought-after resource of reproductive health information for their patients.
Linda Hiraki, MD, FRCPC, SM, ScD
Hospital for Sick Children (SickKids)
Title of Project
Investigating the Genetics of Anxiety and Depression in Children and Adolescents with Systemic Lupus Erythematosus
About the Researcher
Dr. Linda Hiraki is a Clinician-Scientist in the Division of Rheumatology and Scientist in the Genetics & Genome Biology, at the Hospital for Sick Children (SickKids), Toronto and Associate Professor of Pediatrics and Epidemiology at the University of Toronto. Hiraki completed her medical degree at Queen's University, and her clinical training in pediatrics and rheumatology at SickKids. Hiraki went on to complete research training at the Harvard T.H. Chan School of Public Health where she completed a Masters and Doctor of Science in Epidemiology. Hiraki holds a Canada Research Chair in Genetics of Rare Systemic Inflammatory Diseases. Hiraki leads the SickKids Lupus Database and Biorepository, with clinical data from over 1,000 patients, and genetic data from >600 patients. She is coordinating a large, international collaborative cohort study of systemic lupus erythematosus patients followed prospectively over years of disease to understand the genetics of lupus, its many manifestations, the disease course and related outcomes. The Michael Jon Barlin Pediatric Lupus Research Award will support essential work into improved understanding of the genetics of mood disorders, which may lead to earlier diagnosis, influence screening and improve therapy.
Project Summary
Lupus is a chronic autoimmune disease that can affect various organs and tissues in the body. In lupus, a person's immune system attacks their own healthy cells and body tissues, leading to inflammation and damage. Up to 20% of lupus patients are diagnosed as children or teens. Lupus not only affects the physical health of those affected, but mental health as well. There is an increased prevalence of anxiety and depression among children and teens with lupus compared to their peers without lupus. Children and teens are more likely to have depression than adults with lupus.
Prior studies have shown that genetics play an important role in the risk of developing lupus, as well as the risk of developing depression and anxiety. How genetics influence the risk of mood disorders in children and teens with lupus is unknown.
Our research team is uniquely poised to identify the genetics leading to anxiety and depression in those with childhood-onset lupus. We care for a large cohort of children and teens with lupus, who have been followed since their diagnosis. Our clinic routinely screens patients for depression and anxiety at each visit. The majority of these patients have consented to participate in genetic research.
As a result, we have a large number of patients with childhood-onset lupus, with detailed information on mood disorders, who have also undergone genetic testing. With this combination of detailed genetic and clinical information, we will examine the genetics of the increased prevalence of mood disorders in children and teens with lupus. These new insights into the biology underlying mood disorders in lupus patients can improve care and the lives of all people with lupus. It may enable earlier detection of mood disorders and more effective and individualized treatment.
Ram Singh, MD, MBBS, FACP, FASN, FACR
University of California – Los Angeles
Title of Project
Proteogenomic Profiling of Kidney Biopsies from Children with Lupus Nephritis Using Spatial-CITE-seq
About the Researcher
Ram Raj Singh is a physician-scientist and immunologist/rheumatologist at the University of California, Los Angeles (UCLA). He is Professor of Medicine and Pathology at David Geffen School of Medicine and Member of the Jonsson Comprehensive Cancer Center. He served as the Program Director for an NIH T32 grant in translational immunology/rheumatology. Dr. Singh conducts basic, clinical, and translational research on autoimmune diseases pathogenesis and outcomes. Dr. Singh has been active in lupus research since his residency days when he co-authored the first report on SLE prevalence in India. His early work on SLE survival and autoantibodies was recognized by several awards including Boots Gold Medal and Merck Award. His basic research work has been recognized by over a dozen national and international awards, including Carol Nachman Prize, one of the largest international prize in experimental rheumatology that he received from the President of Germany for his work on T-cell tolerance induction in lupus; Henry Kunkel Award from the American College of Rheumatology for his work on minigene vaccines to deplete anti-DNA B-cells; Cutting Edge Lupus Research-Lupus Research Institute award for his work on impaired Langerhans dendritic cells' migration in lupus dermatitis; James R. Klinenberg Science Award from the National Arthritis Foundation; Science Recognition Award from the Clinical Immunology Society; and Henry Christian Award for two consecutive years from the American Federation for Medical Research. Research in Dr. Singh's laboratory has been funded by grants from the National Institutes of Health – NIAMS, NIAID, NICHD, NIDDK, and NHLBI, Rheumatology research Foundation, American Heart Association, Arthritis Foundation, Scleroderma Foundation, and Lupus Foundation of America. His recent unpublished work has identified novel interactions between race/ethnicity, rural-urban neighborhood, and income level in lupus nephritis mortality at the population level.
Project Summary
We recently reported that lupus ranks among the top 10 leading causes of death in 15-24-year-old females in the United States. Kidney disease is a major factor that leads to poor outcomes in children with lupus. Current treatments for lupus kidney disease involve medications that suppress the immune system and make children vulnerable to infections and other adverse effects.
Lupus kidney disease and its complications accounted for 279 deaths in children over the last two decades in the United States. Only 40-60% of children with lupus kidney disease achieve good response with the currently available treatments. Hence, we desperately need new, safer treatments that are based on what goes wrong in the kidneys from children with lupus. There have been several hurdles to identify new targets of treatment, including a limited access to tiny kidney biopsy tissues that we obtain from children with lupus for making diagnoses.
Recent advancements in technology will allow us to test if we can use tiny micrometer slices of the stored kidney biopsy blocks to identify genes and proteins that are abnormally present in children with lupus. We will develop and use this technology to obtain new preliminary information, which will form the basis for a large grant proposal from the National Institutes of Health, foundations, and other agencies with a goal to identify new targets of treatment for children with lupus kidney disease.