Systemic Lupus Erythematosus (SLE) is a disease that can affect any internal organ in the body, causing damage to the kidneys, heart, joints, skin, and central nervous system. The course of the disease is unpredictable, with periods of illness and remission. SLE affects females more frequently than males; 20% of people with SLE develop symptoms in childhood and childhood-onset SLE (cSLE) is often more severe than SLE occurring in adults. Up to 80% of children with cSLE develop lupus nephritis, resulting in higher mortality rates in childhood versus adult-onset SLE. Treatments for cSLE are limited, and there are no medications currently approved by the Food and Drug Administration specifically for children and adolescents with cSLE.
Research is critical to advance care and improve outcomes for patients with cSLE. Our understanding of cSLE is limited by key gaps in knowledge regarding the phenotypic and genetic heterogeneity impacting natural disease course, treatment choices, clinical outcomes and medication toxicity. Additional important areas in need of study include the role of environmental triggers, pharmacokinetics, and management of concerns specific to the pediatric population such as neurodevelopment, growth, puberty, mental health and educational development.
The SLE Committee is dedicated to advancing research to address gaps in knowledge in the pathophysiology, disease processes, and outcomes of pediatric SLE. Reflecting the heterogeneity of SLE manifestations and importance of clinical and patient/family perspectives, SLE Committee members include rheumatologists, nephrologists, dermatologists, psychologists, patients and parents, and others.
SLE Committee members are developing and conducting projects utilizing CARRA SLE registry data, as well as other investigator-initiated projects. SLE Committee members are also collaborating with CARRA TRTC to establish a SLE biospecimen repository, and develop SLE translational studies. Additionally, the SLE Committee is partnering with the Lupus Foundation of America with the shared goal of improving the care, treatment, and lives of youth with SLE by advancing impactful research in the field.
All SLE Work Groups welcome additional volunteers. Please contact the group leaders if you are interested in joining or learning more.
Lupus Nephritis (co-leaders: Laura Lewandowski, Scott Wenderfer)
Represents a collaboration between CARRA and the Midwest Pediatric Nephrology Consortium (MWPNC) and currently has over 50 members. Current workgroup projects include:
Cutaneous Lupus (co-leaders: Kaveh Ardalan, Lisa Arkin)
Represents collaboration between CARRA and Pediatric Dermatology Association (PeDRA). Ongoing projects include a survey of pediatric rheumatologist and dermatologists regarding current management of discoid lupus and development of a retrospective discoid lupus cohort study. Current workgroup projects include:
Anti-phospholipid Syndrome (leader: Barry Myones)
The goal of the workgroup is to coordinate efforts with the Pediatric APS International Task Force in the identification of unanswered questions in Pediatric APS, develop specific research questions that can be addressed by CARRA, and to facilitate projects that gather data to answer these questions within the CARRA community.
Mental Health (co-leaders: Andrea Knight, Tamar Rubinstein)
The Mental Health Workgroup was developed in 2014 to address gaps in knowledge and care concerning mental health for SLE patients. Since then, it has expanded to projects involving other rheumatologic disease groups, such as juvenile arthritis and juvenile dermatomyositis. The Mental Health Workgroup has refined a prioritized research agenda to address gaps in knowledge regarding the burden, impact, screening, treatment and education/awareness of mental health disorders in children with rheumatologic disease. The group is currently working toward developing consensus guidelines for screening for mental health disorders in youth with rheumatologic disease. Additional current workgroup projects include:
To join one or more of these workgroups or to receive updates on the work of this committee, please update your profile using the link below. You will be added to the committee listserv and any workgroup specific listservs that you have signed up for.
Advances in the care of children with lupus nephritis.
Wenderfer S., et al. Pediatr Res. 2017 Mar;81(3):406-414. doi: 10.1038/pr.2016.247. Epub 2016 Nov 17. Review. PMID: 27855151
Approach to Membranous Lupus Nephritis: A Survey of Pediatric Nephrologists and Pediatric Rheumatologists.
Boneparth, A., et al. J Rheumatol. 2017 Nov;44(11):1619-1623. doi: 10.3899/jrheum.170502. Epub 2017 Sep 15. PMID: 28916546
Evaluation of the reliability and validity of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) in paediatric cutaneous lupus among paediatric dermatologists and rheumatologists.
Kushner, C., et al. Br J Dermatol. 2019 Jan;180(1):165-171. doi: 10.1111/bjd.17012. Epub 2018 Oct 5. PMID: 30033560
Delays to Care in Pediatric Lupus Patients: Data from the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry.
Rubinstein, T., et al. Arthritis Care and Research (Hoboken), 2018; 70(3):420-427.
Depression Risk in Young Adults with Juvenile- and Adult-Onset Lupus: Twelve Years of Followup.
Knight, A.M., et al. Arthritis Care Res (Hoboken), 2018 Mar;70(3):475-480. doi: 10.1002/acr.23290.
Gaps in Mental Health Care for Youth with Rheumatologic Conditions: A Mixed Methods Study of Perspectives from Behavioral Health Providers.
Knight, A., et al. Arthritis Care Res (Hoboken), 2018 Jun 28. doi: 10.1002/acr.23683.
Practice patterns and approach to kidney biopsy in lupus: a collaboration of the Midwest Pediatric Nephrology Consortium and the Childhood Arthritis and Rheumatology Research Alliance.
Wenderfer, S., et al. Pediatric Rheumatology Online J. 2015 Jun 19;13:26. doi: 10.1186/s12969-015-0024-x. PMID: 26087651
Predictors of disability in a childhood-onset systemic lupus erythematosus cohort: results from the CARRA Legacy Registry
Hersh, A., et al. Lupus, 2018; 27(3):494-500.