Feasibility and preliminary data for a State-wide South Carolina Lupus Registry

Lupus ◽  
2021 ◽  
pp. 096120332110145
Author(s):  
Brittany L Smalls ◽  
Trevor D Faith ◽  
Hetlena Johnson ◽  
Edith M Williams

Background Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina. Methods A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. Results Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. Conclusion A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.

2019 ◽  
Vol 317 (5) ◽  
pp. F1274-F1284 ◽  
Author(s):  
Erin B. Taylor ◽  
Jennifer M. Sasser ◽  
Kenji J. Maeda ◽  
Michael J. Ryan

Systemic lupus erythematosus (SLE) is a chronic multisystem autoimmune disorder that is characterized by prevalent hypertension, renal injury, and cardiovascular disease. Numerous studies have reported a low prevalence and/or impaired function of regulatory T (TREG) cells in both patients with SLE and murine models of the disease. Evidence suggests that TREG cell dysfunction in SLE results from a deficiency in IL-2. Recent studies have reported that low-dose IL-2 therapy expands TREG cells in mouse models of SLE, but whether expanding TREG cells protects against hypertension and renal injury during SLE is unclear. To examine this question, female SLE (NZBWF1) and control (NZW) mice were injected with vehicle or recombinant mouse IL-2 three times in 24 h followed by single maintenance doses every 5 days for 4 wk. Treatment with IL-2 effectively expanded TREG cell populations in the peripheral blood, spleen, and kidneys. Circulating levels of anti-dsDNA IgG autoantibodies, a marker of SLE disease activity, were higher in SLE mice compared with control mice but were unaffected by IL-2 treatment. As previously reported by our laboratory, mean arterial pressure, measured in conscious mice by a carotid catheter, was higher in SLE mice than in control mice. Mean arterial pressure was significantly lower in IL-2-treated SLE mice compared with vehicle-treated SLE mice, suggesting that expanding TREG cells using low-dose IL-2 attenuates the development of hypertension. While the mechanism for the protection against hypertension is unclear, it does not appear to be related to the delay of SLE disease progression.


Hypertension ◽  
2016 ◽  
Vol 68 (suppl_1) ◽  
Author(s):  
Erin B Taylor ◽  
Michael J Ryan

Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder that is characterized by aberrant immunoglobulin (Ig) production, notably pathogenic autoantibodies, and is associated with prevalent hypertension, renal injury, and cardiovascular disease. Recent studies by our laboratory have shown that chronic B cell depletion with anti-CD20 monoclonal antibody reduces autoantibody production and prevents the development of hypertension in an experimental female mouse model of SLE (NZBWF1). However, the treatment was only effective when administered before the onset of autoantibody production. Because long-lived plasma cells produce the majority of serum Ig and are the primary source of autoantibodies in SLE, we hypothesized that depletion of plasma cells using the proteasome inhibitor bortezomib would lower autoantibody production and attenuate hypertension. Thirty week old female NZBWF1 and control (NZW) mice were injected i.v. with vehicle (0.9% saline) or bortezomib (0.75 mg/kg) twice weekly for four weeks. Percentages of CD138 + intracellular-κ light chain + plasma cells in the bone marrow were lower in bortezomib treated SLE mice compared to vehicle-treated SLE mice (1.7±0.19% vs. 0.95±0.18%, p<0.05), as assessed by flow cytometry. Total plasma IgG was higher in SLE mice as compared to control mice (5.02±1.2 mg/mL vs. 2.88±0.78, p<0.05), and were lower in SLE mice treated with bortezomib (1.5±0.5 mg/mL, p<0.05 vs. SLE-vehicle). In addition, bortezomib treatment reduced circulating anti-dsDNA IgG levels in SLE mice (OD450 1.36±0.25 vs. 0.44±0.11 p<0.01). Urinary albumin excretion, an indicator of glomerular injury, was increased in SLE mice as compared to control mice (16.8±10.1 vs. 0.015±0.002 mg/day, p<0.05) and was lower in SLE mice treated with bortezomib (0.24±00.16 mg/day, p<0.05 vs. SLE-vehicle). Mean arterial pressure (MAP; mmHg) measured in conscious mice by carotid artery catheter was higher in SLE mice than in control mice (142±5 vs. 118±3, p<0.001). MAP was significantly lower in SLE mice treated with bortezomib when compared to vehicle treated mice (119±4 vs. 142±5, p<0.001). These data suggest that production of autoantibodies by plasma cells in SLE mechanistically contribute to the pathogenesis of hypertension.


Author(s):  
Jared T. Freeman ◽  
Gwendolyn E. Campbell ◽  
Greg Hildebrand

Systematically evaluating the impact of novel technology and organizational structure on team performance is a complex, multidimensional task. We define several of these dimensions that are of particular interest in the development of new command and control teams and technologies for the U.S. Navy. In addition, we describe an approach to stimulating and measuring human behavior on these dimensions, and an experiment in which this approach is applied. Preliminary data are presented.


2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Charrise M. Ramkissoon ◽  
Amparo Güemes ◽  
Josep Vehi

AbstractSystemic lupus erythematosus (SLE) is a chronic systemic autoimmune disorder that commonly affects the skin, joints, kidneys, and central nervous system. Although great progress has been made over the years, patients still experience unfavorable secondary effects from medications, increased economic burden, and higher mortality rates compared to the general population. To alleviate these current problems, non-invasive, non-pharmacological interventions are being increasingly investigated. One such intervention is non-invasive vagus nerve stimulation, which promotes the upregulation of the cholinergic anti-inflammatory pathway that reduces the activation and production of pro-inflammatory cytokines and reactive oxygen species, culpable processes in autoimmune diseases such as SLE. This review first provides a background on the important contribution of the autonomic nervous system to the pathogenesis of SLE. The gross and structural anatomy of the vagus nerve and its contribution to the inflammatory response are described afterwards to provide a general understanding of the impact of stimulating the vagus nerve. Finally, an overview of current clinical applications of invasive and non-invasive vagus nerve stimulation for a variety of diseases, including those with similar symptoms to the ones in SLE, is presented and discussed. Overall, the review presents neuromodulation as a promising strategy to alleviate SLE symptoms and potentially reverse the disease.


2022 ◽  
Vol 24 (1) ◽  
Author(s):  
Gilberto Pires da Rosa ◽  
Bernardo Sousa-Pinto ◽  
Ester Ferreira ◽  
Olga Araújo ◽  
Giuseppe Barilaro ◽  
...  

Abstract Background Seronegative antiphospholipid syndrome (SN-APS) is often defined as the presence of APS criteria manifestations, negative antiphospholipid antibodies (aPL), and coexistence of APS non-criteria manifestations. Nevertheless, the impact of these non-criteria features is still unclear. On a different note, the relevance of one single aPL positive determination in patients with APS manifestations is another domain with limited evidence. We aim to compare the course of SN-APS and single-positive aPL (SP-aPL) patients with that of individuals with APS manifestations without non-criteria features/aPL positivity (controls). Methods Retrospective analysis of patients with thrombosis/obstetric morbidity assessed in two European hospitals between 2005 and 2020. Patients were divided into SN-APS, SP-aPL, and control groups. Clinical characteristics, comorbidities, and therapies were compared. Results A total of 82 patients were included in the SN-APS group, 88 in the SP-aPL group, and 185 in the control group. In Cox regression model, SN-APS displayed more thrombosis recurrence than controls (HR 3.8, 95% CI 2.2–6.5, p < 0.001) even when adjusting for the presence of hereditary thrombophilia, systemic lupus erythematosus, or contraceptive hormonal treatment. In SP-aPL, the difference in thrombosis recurrence did not reach statistical significance (p = 0.078). Indefinite anticoagulation (p < 0.001 and p = 0.008, respectively) and vitamin K antagonist (VKA) use (p < 0.001 in both cases) were more common in SN-APS/SP-aPL. Conclusion SN-APS displayed more thrombosis recurrence, indefinite anticoagulation, and VKA use than controls without non-criteria manifestations. The presence of such features in patients with thrombosis and negative aPL may negatively impact their clinical course.


Author(s):  
Wendy Rodgers ◽  
Edith M. Williams ◽  
Brittany L. Smalls ◽  
Tyler Singleton ◽  
Ashley Tennessee ◽  
...  

Introduction: Over 400,000 slaves were taken from Africa and brought to Charleston, South Carolina, as part of the transatlantic slave trade during the 18th and 19th centuries. Due to these negative historical events, the healthcare of African Americans in Charleston may be compromised in regard to chronic illnesses and other conditions affecting minorities, such as lupus. Materials and Methods: The current study used an ethnographic approach to obtain the perspectives of lupus patients with the goal of identifying gaps within current research. In addition to patient perspectives, the geographical location of Charleston, South Carolina was considered through inquiries around culture, community, advocacy, and client/patient interaction to establish a narrative for the themes that emerged. Results: The eleven major themes identified were connectedness, knowledge, experience with lupus, compliance, clinical trial participation, career and planning for the future, visits, access to resources, lifestyle, transition from child to adult care, and an overarching theme of self-management. Conclusion: Understanding healthcare perceptions and decision-making among culturally diverse populations, particularly those who have been defined by centuries of substandard care, marginalization, exploitation, and distrust, is critical to the development of culturally tailored interventions designed to improve patient outcomes and reduce health disparities.


2011 ◽  
Vol 70 (1) ◽  
pp. 5-11 ◽  
Author(s):  
Beat Meier ◽  
Anja König ◽  
Samuel Parak ◽  
Katharina Henke

This study investigates the impact of thought suppression over a 1-week interval. In two experiments with 80 university students each, we used the think/no-think paradigm in which participants initially learn a list of word pairs (cue-target associations). Then they were presented with some of the cue words again and should either respond with the target word or avoid thinking about it. In the final test phase, their memory for the initially learned cue-target pairs was tested. In Experiment 1, type of memory test was manipulated (i.e., direct vs. indirect). In Experiment 2, type of no-think instructions was manipulated (i.e., suppress vs. substitute). Overall, our results showed poorer memory for no-think and control items compared to think items across all experiments and conditions. Critically, however, more no-think than control items were remembered after the 1-week interval in the direct, but not in the indirect test (Experiment 1) and with thought suppression, but not thought substitution instructions (Experiment 2). We suggest that during thought suppression a brief reactivation of the learned association may lead to reconsolidation of the memory trace and hence to better retrieval of suppressed than control items in the long term.


Crisis ◽  
2010 ◽  
Vol 31 (5) ◽  
pp. 238-246 ◽  
Author(s):  
Paul W. C. Wong ◽  
Wincy S. C. Chan ◽  
Philip S. L. Beh ◽  
Fiona W. S. Yau ◽  
Paul S. F. Yip ◽  
...  

Background: Ethical issues have been raised about using the psychological autopsy approach in the study of suicide. The impact on informants of control cases who participated in case-control psychological autopsy studies has not been investigated. Aims: (1) To investigate whether informants of suicide cases recruited by two approaches (coroners’ court and public mortuaries) respond differently to the initial contact by the research team. (2) To explore the reactions, reasons for participation, and comments of both the informants of suicide and control cases to psychological autopsy interviews. (3) To investigate the impact of the interviews on informants of suicide cases about a month after the interviews. Methods: A self-report questionnaire was used for the informants of both suicide and control cases. Telephone follow-up interviews were conducted with the informants of suicide cases. Results: The majority of the informants of suicide cases, regardless of the initial route of contact, as well as the control cases were positive about being approached to take part in the study. A minority of informants of suicide and control cases found the experience of talking about their family member to be more upsetting than expected. The telephone follow-up interviews showed that none of the informants of suicide cases reported being distressed by the psychological autopsy interviews. Limitations: The acceptance rate for our original psychological autopsy study was modest. Conclusions: The findings of this study are useful for future participants and researchers in measuring the potential benefits and risks of participating in similar sensitive research. Psychological autopsy interviews may be utilized as an active engagement approach to reach out to the people bereaved by suicide, especially in places where the postvention work is underdeveloped.


2008 ◽  
Author(s):  
Daniel P. Jenkins ◽  
Neville A. Stanton ◽  
Paul M. Salmon ◽  
Guy H. Walker

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