DR. ROSALIND RAMSEY-GOLDMAN, MD

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A decision-support tool delivered via tablet, website, or smartphone app was rolled out across 15 U.S. rheumatology clinics to help nearly 1,900 patients with lupus choose immunosuppressive treatments. Patients showed low decisional conflict, strong alignment between their preferred and actual role in decisions, and high satisfaction with doctor-patient communication — and these gains held steady at three and six months. The free app (ManageMyLupus) proved feasible across a geographically and racially diverse population, including a majority of African American participants.

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Scientists identified a very common genetic variant in the IRF7 gene that has persisted in human populations for thousands of years and raises the risk of lupus. The variant makes immune cells pump out more interferon-alpha — a molecule that fights viruses — but also revs up the immune system in ways that promote autoimmunity. In mice, the equivalent variant both improved defense against a virus and increased production of self-attacking antibodies, showing the variant is an evolutionary trade-off between better infection control and higher autoimmune risk.

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Researchers identified a protein called C4b-binding protein (C4BP) as the missing piece that activates antibodies against the membrane lipid phosphatidylethanolamine (anti-PE) in conditions like thrombosis and pregnancy complications. When these antibodies bind C4BP, they block its normal job of keeping inflammation in check, causing runaway complement activation — a key driver of tissue damage. This finding pinpoints a new target for diagnosing and potentially treating diseases linked to anti-PE antibodies.

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COVID-19 vaccine uptake among people with rheumatic conditions remains low, particularly in historically marginalized communities, for reasons including healthcare mistrust, misinformation, fear of disease flares, and inconsistent advice from doctors. Two randomized trials are using community partnerships and multimodal strategies to deliver accurate vaccine information and reduce hesitancy. The trials specifically target communities that were disproportionately harmed by COVID-19 but are least represented in vaccination programs.

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International pediatric rheumatology societies used a structured consensus process involving 21 experts and 4 patients to create standardized data sets for childhood lupus registries worldwide. The result is a Core Dataset of 46 essential items and an Expanded Dataset with 26 additional items including patient-reported outcomes, both with defined collection time points. Harmonizing how childhood lupus data are collected across countries will make it much easier to conduct large-scale international studies of this severe form of the disease.

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The Systemic Lupus International Collaborating Clinics (SLICC) group held a seminar bringing together lupus researchers and clinicians from Africa to share knowledge about how lupus presents and is managed on the continent, where the research network currently has no members. The meeting highlighted gaps in diagnostics, access to treatment, and research infrastructure across African countries. Plans were made to explore future collaborations in clinical care, research, and education to better represent the global lupus burden.

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Researchers reviewed over 500 lupus clinical trials and systematic reviews published since 2010 to build a candidate list of outcome domains for a new international standard for measuring what matters in lupus research. After filtering and grouping, 25 candidate domains emerged, covering disease activity, organ damage, patient-reported impacts, and other key areas. These 25 domains will go forward for patient and clinician input to determine which should be included in the official lupus core outcome set.

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A computerized lupus treatment decision aid was implemented in 15 U.S. rheumatology clinics between 2019 and 2024, reaching between 3% and 44% of eligible patients depending on the site. Larger clinical teams were linked to higher patient reach, and clinical staff consistently rated the tool as appropriate, acceptable, and feasible over two years of follow-up. The findings provide real-world evidence that this type of shared decision-making tool can be sustained in diverse outpatient settings, even through a pandemic.

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An international panel of 119 lupus experts from three major research networks developed consensus treatment recommendations for 24 uncommon lupus complications that existing guidelines do not adequately cover. For most rare manifestations — affecting the gut, lungs, heart, nervous system, and skin — the experts converged on regimens built around hydroxychloroquine, steroids, and either cyclophosphamide or mycophenolate mofetil, with the choice driven by severity. The consensus fills a practical gap for clinicians managing lupus patients with unusual presentations.

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This is a published correction to an earlier article about a community-developed curriculum addressing COVID-19 vaccine hesitancy in Black individuals with rheumatologic conditions. The correction does not contain new research findings.

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Analysis of more than 2,000 lupus patients on hydroxychloroquine (HCQ) found that blood levels at or above 1,150 ng/mL are associated with a doubling of the odds of drug toxicity and no additional benefit for controlling disease activity, establishing this as the upper safe limit. The therapeutic window is 750 to under 1,150 ng/mL, and patients with moderate-to-severe kidney disease are more than twice as likely to accumulate toxic levels. These data support routine blood level monitoring to personalize HCQ dosing, particularly for patients with kidney impairment.

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Three types of antibodies targeting mitochondrial components were measured in over 1,100 lupus patients followed for years, and higher levels consistently predicted worse outcomes — including kidney disease, artery-blocking vascular events, and death. The associations were especially strong for antibodies against mitochondrial DNA and RNA when measured at the most recent visit rather than at diagnosis. Adding these antibody measurements to clinical practice could help identify which lupus patients need more intensive monitoring or treatment.

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An international working group of lupus patients and researchers used breakout sessions and follow-up virtual meetings to trim 132 candidate outcome sub-themes down to 20 preliminary domains for the updated lupus core outcome set. Patients and clinician-researchers collaborated throughout to ensure both life-impact and clinical perspectives were preserved. This winnowed list will now move to a formal Delphi consensus process to determine the final standard set of outcomes for lupus trials and studies.

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Researchers built and tested computer algorithms to identify lupus nephritis patients in electronic health records at two medical centers, comparing a simple code-based approach to algorithms using natural language processing of pathology reports and clinical notes. The best NLP model — combining structured data, keyword searches, and mapped medical concepts — nearly doubled the accuracy of patient identification compared to the code-only baseline. Accurate electronic identification of lupus nephritis patients can power larger observational studies and make clinical trial recruitment more efficient.

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A community-engaged team in Boston used a structured translation process — including forward translation, expert review, back translation, and focus group testing with Haitian Creole speakers — to create a culturally accurate Haitian Creole version of the Vaccine Hesitancy Scale. Four rounds of revision produced a version that captured the language and cultural context needed to meaningfully assess vaccine hesitancy in this community. The process demonstrates that standard health measurement tools require genuine community partnership to translate accurately.

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An antibody targeting a protein called KIF20B was found in about 30% of lupus patients and was five times more common in the small group of patients who developed cranial nerve damage. The association held after accounting for other clinical and demographic factors, suggesting anti-KIF20B could serve as a blood test marker to identify lupus patients at risk for this rare neurological complication. More research is needed to understand how this antibody contributes to nerve damage.

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A systematic review and meta-analysis of 31 studies found that having adverse social determinants of health — such as lack of insurance, fragmented care, or low neighborhood income — raises the odds of poor lupus kidney disease outcomes by nearly 50%. When patients faced multiple adverse social factors from different domains, the risks multiplied rather than added: Black patients with public insurance and fragmented care had 12 times the odds of poor outcomes. The results call for addressing social factors as a central part of lupus nephritis care to reduce racial and socioeconomic disparities.

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Data from over 1,600 lupus patients followed for nearly 10 years showed that spending more time in remission or low disease activity was consistently linked to lower annual healthcare costs and lower lost-productivity costs. Every 25% increase in time spent in remission reduced direct costs by roughly $1,000 to $1,400 (Canadian) per year and indirect costs by $2,500 per year. The findings make a strong economic case for treating lupus to remission, not just symptom control.

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Patients with lupus and lupus researchers were surveyed to identify which health outcomes should be measured in future lupus clinical trials as part of updating the international standard set last revised in 1998. Patients tended to prioritize domains related to daily life impact, while clinician-researchers focused on clinical measures — highlighting that both perspectives are needed. The survey identified domains with strong existing consensus for inclusion and others needing further discussion before a final updated core outcome set is established.

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This is the protocol for a randomized trial in Boston and Chicago training trusted Black community leaders with rheumatic conditions to spread COVID-19 vaccine information through their social networks. Participants are randomized to receive either a racial justice-framed or a biomedical-framed six-module curriculum, then share what they learned with 12–16 unvaccinated network members. The trial's main goal is to determine which framing more effectively increases COVID-19 vaccine uptake in Black communities.

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Among 111 pregnant people with lupus, those who were medically unprepared for pregnancy — defined by active kidney disease, use of harmful drugs at conception, or stopping pregnancy-safe medications — had significantly higher rates of disease flares and worse pregnancy outcomes, though they did not themselves perceive higher disease activity. Those with unplanned pregnancies reported higher perceived disease activity and substantially more depressive symptoms. Both better pre-conception medical optimization and reducing unplanned pregnancies are needed to improve outcomes for lupus patients.

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Community-academic partnerships in Boston and Chicago co-developed two virtual educational curricula aimed at reducing COVID-19 vaccine hesitancy among Black individuals with rheumatologic conditions. One curriculum frames vaccine hesitancy through a racial justice lens, acknowledging historical and structural racism; the other uses a traditional biomedical approach. In an upcoming trial, trusted community members will use whichever curriculum they receive to encourage COVID-19 vaccination in their social networks.

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In a cohort of 149 women with established lupus, those with higher frailty scores at baseline — measured using a validated lupus-specific frailty index — were 28% more likely to accumulate new organ damage over the following five years, even after accounting for age, race, and disease duration. The findings externally validate the frailty index in a prevalent lupus population and suggest that measuring frailty could identify patients at highest risk for disease progression. Frailty assessment may add important prognostic information beyond standard lupus disease measures.

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An international group of 50 lupus experts from 13 countries used facilitated small-group sessions and a consensus meeting to define what 'damage' means in lupus and what a revised damage index should measure. Key conclusions were that damage should be irreversible injury attributable to lupus, measured independently of disease activity, and assessed over a patient's entire life course — including before formal diagnosis. This conceptual framework will guide development of an updated version of the standard tool used to track long-term lupus complications.

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Community-academic teams in Boston and Chicago trained trusted Black community members as popular opinion leaders to spread information about lupus clinical trials in their social networks. The curriculum — covering how trials work, barriers to participation, and the history of racism in research — produced significant knowledge gains, and participating leaders reached over 2,300 community members. The program successfully moved to a fully virtual format during COVID-19 and showed that community-embedded outreach can increase awareness of clinical trials among groups historically excluded from them.

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Neuropsychiatric complications of lupus — such as seizures and cerebrovascular disease — were associated with substantially higher healthcare costs and lost productivity compared to lupus patients without these events. Over a 10-year horizon, new or ongoing neuropsychiatric events raised direct healthcare costs 1.5-fold and indirect (productivity) costs 1.3-fold, with indirect costs dwarfing direct costs by three- to fivefold across the board. The findings highlight neuropsychiatric lupus as a major economic burden on patients and health systems.

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Lupus disproportionately affects people of Asian, Black, Hispanic, and Indigenous backgrounds, yet most epidemiological data come from North America and Europe, leaving large gaps in understanding the global burden of the disease. Surveillance studies are sparse in many regions, compounded by limited access to diagnostics and treatment. This review outlines the current state of global lupus epidemiology and proposes strategies to close data gaps, particularly in low- and middle-income countries.

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Machine learning applied to antibody profiles from 805 lupus patients identified four distinct patient clusters with very different long-term outcomes. Patients in clusters defined by anti-Smith/anti-RNP antibodies or by multiple simultaneous antibodies had the highest disease activity and worst survival, while a cluster with low antibody levels had the mildest course, and a cluster dominated by antiphospholipid antibodies had the highest rates of seizures. Grouping patients by their antibody fingerprint over time — rather than at a single point — provides a powerful way to predict who is at greatest risk.

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Qualitative interviews with 8 physicians and 12 community leaders in Boston and Chicago identified misinformation, mistrust rooted in historical racism, and concerns about vaccine development as the main drivers of COVID-19 vaccine hesitancy among Black individuals with rheumatic conditions. Participants emphasized that race, ethnicity, age, and gender shaped how hesitancy was experienced and that effective outreach must be compassionate, individually tailored, and honest about past injustices. These findings directly informed the design of a community-based intervention to promote vaccine uptake.

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Among 660 lupus patients prescribed hydroxychloroquine, 7% had extremely low blood levels indicating they were barely taking the drug, and these patients were more than three times as likely to have a disease flare the following year, nearly twice as likely to accumulate organ damage in the first three years, and over five times more likely to die within five years. No single patient characteristic reliably predicted who would be severely non-adherent, making blood level monitoring the most practical way to detect the problem. The findings show that not taking hydroxychloroquine carries serious, measurable health consequences.

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Using a Chicago-area multi-hospital data network, researchers tested algorithms that search electronic health records for lupus classification criteria and found that patients with more lupus-related clinic visits accumulated more positively identified criteria. Pulling data from multiple healthcare sites identified significantly more lupus criteria domains than using a single hospital's records alone, especially for patients who received fragmented care across institutions. The work supports using multi-site electronic data networks to more fully characterize lupus patients for research.

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A peer education program trained lupus patients with clinical trial experience to educate other trial-naive lupus patients about clinical trials at five academic medical centers. Compared to a waiting-list control group, participants who received peer education showed significantly higher knowledge and stronger intentions to join a trial, with self-efficacy gains maintained at three months and nearly half reporting trial engagement at one year. Black and Hispanic participants rated the program most favorably, suggesting peer education is especially well-suited to increasing diversity in lupus clinical trials.

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The Lupus Intervention Fatigue Trial (LIFT) was disrupted by COVID-19 and required substantial protocol changes to continue, including electronic consent, remote visits, home-based outcome surveys, and telemedicine physician assessments. The only persistent challenge was obtaining required safety blood draws, which were delayed up to one month. All follow-up visits were completed with no participant withdrawals, and the adaptations developed may serve as a useful model for other behavioral intervention trials.

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In over 1,400 lupus patients followed from diagnosis, those who reduced their hydroxychloroquine dose had a 20% higher risk of disease flare compared to those who maintained their dose, and those who stopped entirely had a 56% higher flare risk. Patients on prednisone at the time of dose change were at particularly elevated risk in all groups, and those with less education were most vulnerable after discontinuation. The data support maintaining hydroxychloroquine at therapeutic doses whenever possible and being especially cautious in higher-risk subgroups.

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The Lupus Intervention Fatigue Trial (LIFT) is testing whether a six-month motivational interviewing program — coaching participants on physical activity and diet — reduces fatigue in 236 people with lupus compared to an educational control. The primary endpoint is the change in Fatigue Severity Score at six months, with objective accelerometer measures of physical activity and dietary quality as secondary outcomes. Results from LIFT will provide evidence on whether behavioral coaching can meaningfully reduce one of the most disabling symptoms of lupus.

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Three different antinuclear antibody (ANA) tests were compared in over 800 lupus patients measured repeatedly over five years, finding that all three showed high positivity rates that remained stable over time, with more than 91% agreement between tests. The ELISA test showed a modest drop in positivity at year five compared to the two immunofluorescence assays, suggesting that a negative ELISA result in a patient suspected of having lupus should prompt reflex testing with a different method. Overall, the three assays perform similarly and reliably in established lupus.

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Electronic health records from 617 lupus patients were analyzed to assess whether they contained the data needed to track bone health quality indicators for patients on chronic high-dose steroids. All nine components of the standard osteoporosis management quality indicator could be identified in the records, but fewer than half of high-dose steroid users had bone density screening ordered and only 6% had documented osteoporosis screening. The work confirms that EHR-based quality monitoring is technically feasible but reveals serious gaps in real-world osteoporosis care for lupus patients.

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Using data from over 1,600 lupus patients in an international cohort, this study found that spending more time in remission or low disease activity — whether on or off medications — was independently linked to lower rates of new organ damage accrual over time. Even partial increases in time spent in better-controlled disease states reduced damage risk meaningfully. The findings strengthen the case that treating lupus to remission, not just reduced symptoms, protects organs over the long term.

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An international survey of over 2,100 lupus patients found that while doctors remained the most trusted health information source, patients accessed them less during the COVID-19 pandemic and turned more to news and social media instead. About 17% of respondents reported negative effects from information encountered through those less-trusted sources. The results underscore the need to make physicians more accessible — in person and via telemedicine — to counter misinformation for people managing a complex chronic disease.

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In a large international cohort of over 1,400 lupus patients followed from the time they started hydroxychloroquine, retinal toxicity was rare — affecting about 1% of patients — and no cases appeared within the first four years of treatment. Older age at lupus diagnosis was associated with numerically higher risk, and cumulative years on the drug may also matter. The findings support current ophthalmology monitoring guidelines, especially for patients who have been on hydroxychloroquine for 10 or more years.

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A meta-analysis of six studies covering nearly 2,000 patients found that the fluorescence enzyme immunoassay for anti-double-stranded DNA antibodies achieves a pooled specificity of 94.7% against disease controls — meeting the 90% threshold required by the 2019 lupus classification criteria. This confirms the test performs well enough to be used as specified in the updated diagnostic framework. The analysis provides the quantitative evidence base that the test belongs in standard lupus classification.

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Among six chronic inflammatory diseases studied in an urban hospital system, lupus and systemic sclerosis carried the highest risk of coronary heart disease, with lupus patients having nearly four times the risk of heart attack compared to matched controls without inflammatory disease. For conditions like HIV, rheumatoid arthritis, and psoriasis, elevated heart disease risk was mainly seen in patients with more severe disease. Clinicians should tailor cardiovascular risk reduction strategies based on the specific inflammatory disease and its severity.

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Women with lupus had more than twice the risk of new arterial plaque in their neck arteries over five years compared to healthy women without lupus, underscoring the accelerated cardiovascular aging seen in the disease. Within the lupus group, higher fasting blood sugar and larger waist circumference predicted progression, while use of hydroxychloroquine was protective against plaque buildup. The results point to modifiable targets — blood sugar, weight, and consistent hydroxychloroquine use — to slow cardiovascular disease in lupus.

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A systematic review and meta-regression of 49 long-term lupus studies found that average daily steroid dose was independently associated with cardiovascular events and osteoporosis with fractures, while cumulative steroid dose was linked to osteonecrosis (bone death). The analysis, covering over 16,000 patients, confirms that steroids contribute to three specific types of irreversible organ damage in lupus beyond their benefits in controlling disease. The findings reinforce the importance of using the lowest effective steroid dose for the shortest possible time.