Studies highlight persistent challenges in lupus diagnosis and access to specialty care, while advancing more inclusive approaches to research and treatment
ORLANDO, Fla., Nov. 4, 2026 /PRNewswire/ — The Lupus Foundation of America (LFA) and investigators funded through the Foundation’s robust research grant programs will showcase new findings that offer important insights into lupus research and care at the American College of Rheumatology (ACR) Convergence 2026 meeting in Orlando, Florida from November 6-11. Together, these studies highlight efforts to better understand the lupus diagnostic journey, increase participation in research, ensure the experiences and priorities of people living with lupus help shape research and treatment decisions, and advance new approaches to improve care.
“We look forward to showcasing the work of the Lupus Foundation of America at this year’s ACR Convergence to highlight the most important challenges facing people with lupus – from identifying barriers to diagnosis and specialty care to ensuring their voices help shape the research, tools and treatments intended for them,” said Joy Buie, PhD, MSCR, RN, Vice President of Research, Lupus Foundation of America. “Each LFA supported presentation helps us better understand where progress is being made, where gaps remain, and how we can continue moving the needle forward in lupus care and research to improve the lives of everyone living with lupus.”
LFA-Funded Research Advances Study of Potential New Treatment and Addresses Barriers to Research Participation
An LFA-funded Phase II clinical study of the potential breakthrough therapy, “Mesenchymal Stromal Cells for Refractory Lupus: Results from the Phase II Multicenter Double-Blind, Placebo-Controlled Trial” (Abstract #LB17, presented on November 10), found that a single infusion of high-dose mesenchymal stromal cells (MSCs) produced treatment responses in nearly half of participants with refractory lupus, more than double the placebo rate. Presented by Dr. Gary Gilkeson, these encouraging findings support further evaluation of high-dose MSCs in a confirmatory trial.
Additionally, the LFA-funded Community Action for Resilience Against Lupus (CARE) study titled “Insights into Lupus Research Participation from Patient and Family Voices: A Thematic Analysis of Involvement in Lupus Prevention Research, (Abstract #0522, presented on November 8) co-authored by Dr. Karen Costenbader, found that personal relevance, practical feasibility and trust in the research process were key factors influencing participation in SLE prevention research. Findings highlight the need to design future lupus prevention studies that minimize participation barriers, build trust and address the unique needs of people living with lupus and their families.
Understanding the Lupus Diagnostic Journey and Access to Care
The study, “Evaluating Time-To-Diagnosis for Patients with Systemic Lupus Erythematosus (SLE) in the Research Accelerated by You (RAY®) Lupus Registry,” (Abstract #2748, presented on November 10) co-authored by Daniel McSkimming, Assistant Director of Data Governance and Analytics at LFA, analyzed participant-reported RAY data from 3,063 people living with SLE to identify factors associated with delays in diagnosis. Findings identified certain demographic factors and presenting symptoms associated with longer or shorter diagnostic journeys.
Another LFA study co-authored by McSkimming, “High Variation in Prescribed Medications for Lupus, an Exploration of Nationwide Claims Data,” (Abstract #2708, presented on November 10) examined a nationwide claims dataset to better understand access to rheumatology care. The analysis found that 36% of identified participants were not receiving their lupus medication from a rheumatologist, underscoring ongoing opportunities to better understand and address gaps in specialty care.
Additionally, Wendy Rodgers, MPH, Director of Care and Support Services at LFA along with members of the education and support services team will be speaking on the panel “Connecting the Dots: Support, Education, and Empowerment in Lupus Care,” taking place on Tuesday, November 10, highlighting how national virtual education, personalized guidance from health educators, and support groups complement clinical care and empower people living with lupus and their families to play an active role in their care.
Centering the Voices of Lupus Research and Treatment
Several LFA-led studies presented at the conference will highlight the importance of incorporating the perspectives of people with lupus into research participation, treatment decisions and future care. In the abstract co-authored by Safoah Agyemang, MS, Senior Manager of Patient Engagement and Health Outcomes at LFA, “Improving Research Accelerated by You (RAY®) Lupus Registry Recruitment Among Historically Underrepresented People Living with Lupus: A Multi-Phase Communication Development and Validation Study,” (Abstract #1536, presented on November 9) researchers developed and tested culturally-aligned communications designed to improve participation in the RAY registry.
Authored by LFA’s McSkimming, the study “Examining differences in symptoms and treatment preference, an exploration of the Research Accelerated by You (RAY) Lupus Disease Registry” (Abstract #2522, presented on November 10) analyzed self-reported data from 4,771 people living with lupus and identified differences in symptoms, treatment priorities and desired outcomes across race and ethnicity. The findings reinforce the importance of recognizing individual priorities and experiences when creating treatments, supporting treatment planning, and communicating with those impacted.
In the abstract titled “Patient Perspectives on Allogeneic CAR T Cell Therapy in Systemic Lupus Erythematosus: Findings from a Focus Group Study (Part 3)” (Abstract #1539, presented on November 9) by LFA’s Nishat Bhuiyan, Ph.D., Director of Research, participants with severe SLE expressed conditional interest in an investigational allogeneic CAR T-cell therapy and emphasized safety, access to lupus-specialist care, financial support and durability of benefit as important considerations. The findings can help inform education and care-delivery strategies as cell therapy research in lupus continues to evolve.
The LFA is also developing a shared decision-making tool for people living with lupus. Findings from “What People with Lupus Need to Make Treatment Decisions: Focus Group Findings to Inform a Shared Decision-Making Tool” (Abstract #0610, presented on November 8) showed strong unmet needs for clear, comprehensive treatment information and highlighted the importance of self-advocacy, symptom tracking, social support and responsive healthcare provider relationships.
Improving Clinical Trial Measures and Strengthening the Rheumatology Workforce
Additional LFA-supported research presented at ACR highlights improved measures of treatment response, and strategies to improve care and outcomes for people with lupus. Among these findings, “A new endpoint for SLE clinical trials: the Treatment Response Measure for Systemic Lupus Erythematosus clinical trials (TRM-SLE)” (Abstract #2839, presented on November 10), led by Dr. Eric Morand, describes a new global-consensus-derived clinical outcome assessment for adult and adolescent SLE trials. The measure incorporates eight organ domains and is being evaluated in randomized clinical trial datasets and ongoing studies, with the goal of improving how clinically meaningful treatment response is measured in lupus trials. As a partner in the TRM-SLE project, the LFA serves on its steering, scientific advisory, and patient committees, helping bring the perspectives of people with lupus into the development of a measure designed to better capture meaningful treatment response.
Additional research supported by LFA and led by Dr. Candace Feldman will also be presented, focusing on efforts to strengthen the broader research and care environment. “Consensus Metrics to Guide and Track Expansion and Enrichment of the Adult and Pediatric Rheumatology Workforce: Results of a Scoping Review and Modified Delphi Process” (Abstract #1484, presented on November 9) developed 20 consensus-informed metrics spanning areas including recruitment, retention, professional development, leadership and participant impact. The framework is intended to help institutions track progress and promote accountability as they work to expand and strengthen the rheumatology workforce.
Supporting LFA-Funded Researchers Advancing Understanding of Lupus
Studies from LFA-funded researchers and grantees to be presented during the annual meeting include:
- Abhimanyu Amarnani, MD, PhD (2024 Career Development Award) – A Trans-Dominant Negative MiT/TFE Transcription Factor Selectively Marks Pathogenic B Cells in Lupus; and A lupus nephritis endotype is driven by gut microbial lipoglycan through TLR2-independent, lectin receptor-mediated immune activation
- Grace Crossland (2025 Finzi Fellowship) – Mucosal-associated invariant T (MAIT) cells coordinate IL-15-dependent regulatory T cell responses to resolve inflammation in cutaneous lupus
- Jessica English (2024 Career Development Award) – Family Planning and Perceived Medication Risks in Systemic Lupus Erythematosus Pregnancies
- Emma Materne, MD (2026 Career Development Award) – Dissecting SLE Metabolomics in Lupus Nephritis
- Rebecca Sadun (2025 Pediatric Lupus Research Grant) – Barriers and Facilitators of Medication Adherence in Childhood-Onset Systemic Lupus Erythematosus: A Qualitative Study
- Jane Salmon, MD – Treatment of pregnant APS individuals with certolizumab is associated with decreased Interferon-alpha
- Sara Smith (2025 Finzi Fellowship) – Uncovering molecular underpinnings of lupus severity with multi-omic analysis
- Jin Xuan Zhou (2025 Finzi Fellowship) – Evaluating Associations between Diffusion Tensor Imaging Metrics and Cognitive Function in Youth with Childhood-Onset Systemic Lupus Erythematosus
During ACR Convergence 2026, the Lupus Foundation of America will be on-site at booth #4624-NP. LFA will also share real-time updates on scientific initiatives, emerging research, and key findings from the meeting. Stay connected with the latest conference highlights by following the Lupus Foundation of America on LinkedIn and X.
About the Lupus Foundation of America
The Lupus Foundation of America is the premier patient advocacy organization devoted to solving the mystery of lupus, a devastating autoimmune condition where the immune system attacks organs throughout the body, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org.
Contact:
Mike Donnelly
(202) 349-1162
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SOURCE Lupus Foundation of America, Inc.
