scholarly journals Increased Prevalence of Familial Autoimmune Disease in Children With Opsoclonus-Myoclonus Syndrome

2021 ◽  
Vol 8 (6) ◽  
pp. e1079
Author(s):  
Jonathan D. Santoro ◽  
Lauren M. Kerr ◽  
Rachel Codden ◽  
Theron Charles Casper ◽  
Benjamin M. Greenberg ◽  
...  
Keyword(s):  
Autoimmune Disease ◽  
Lupus Erythematosus ◽  
Pediatric Patients ◽  
Age At Onset ◽  
Autoimmune Disorder ◽  
The United States ◽  
Degree Relative ◽  
First Degree Relatives ◽  
Disease Rates ◽  
Opsoclonus Myoclonus Syndrome

Background and ObjectivesOpsoclonus-myoclonus syndrome (OMS) is a rare autoimmune disorder associated with neuroblastoma in children, although idiopathic and postinfectious etiologies are present in children and adults. Small cohort studies in homogenous populations have revealed elevated rates of autoimmunity in family members of patients with OMS, although no differentiation between paraneoplastic and nonparaneoplastic forms has been performed. The objective of this study was to investigate the prevalence of autoimmune disease in first-degree relatives of pediatric patients with paraneoplastic and nonparaneoplastic OMS.MethodsA single-center cohort study of consecutively evaluated children with OMS was performed. Parents of patients were prospectively administered surveys on familial autoimmune disease. Rates of autoimmune disease in first-degree relatives of pediatric patients with OMS were compared using Fisher exact t test and χ2 analysis: (1) between those with and without a paraneoplastic cause and (2) between healthy and disease (pediatric multiple sclerosis [MS]) controls from the United States Pediatric MS Network.ResultsThirty-five patients (18 paraneoplastic, median age at onset 19.0 months; 17 idiopathic, median age at onset 25.0 months) and 68 first-degree relatives (median age 41.9 years) were enrolled. One patient developed systemic lupus erythematosus 7 years after OMS onset. Paraneoplastic OMS was associated with a 50% rate of autoimmune disease in a first-degree relative compared with 29% in idiopathic OMS (p = 0.31). The rate of first-degree relative autoimmune disease per OMS case (14/35, 40%) was higher than healthy controls (86/709, 12%; p < 0.001) and children with pediatric MS (101/495, 20%; p = 0.007).DiscussionIn a cohort of pediatric patients with OMS, there were elevated rates of first-degree relative autoimmune disease, with no difference in rates observed between paraneoplastic and idiopathic etiologies, suggesting an autoimmune genetic contribution to the development of OMS in children.

scholarly journals Association of Primary Biliary Cirrhosis with Opsoclonus Myoclonus Syndrome

2011 ◽  
Vol 2 (2) ◽  
pp. 110-112
Author(s):  
Anil T Kumar ◽  
Sudhir U ◽  
Bakul Gupta ◽  
Punith Kempegowda
Keyword(s):  
Autoimmune Disease ◽  
Primary Biliary Cirrhosis ◽  
Eye Movement ◽  
Disease Process ◽  
Autoimmune Disorder ◽  
Response To Treatment ◽  
Biliary Cirrhosis ◽  
Medical Sciences ◽  
Therapeutic Modalities ◽  
Opsoclonus Myoclonus Syndrome

Primary biliary cirrhosis is an autoimmune disorder affecting exclusively liver. There has been association of this autoimmune disease with various other neurological counterparts, but Opsoclonus-Myoclonus Syndrome in conjunction with primary biliary cirrhosis is unreported yet. Opsoclonus-Myoclonus Syndrome is a disorder of eye movement with an ill-defined etiology. It may be idiopathic or present as a paraneoplastic manifestation with a low response to therapeutic modalities. We present a case of primary biliary cirrhosis that developed Opsoclonus-Myoclonus Syndrome during an exaggeration of disease process which responded well to intravenous corticosteroids. Knowledge of association of Primary biliary cirrhosis with Opsoclonus-Myoclonus Syndrome and its good response to treatment in this setting will help in reducing morbidity in similar situations. Key Words: Primary biliary cirrhosis; Opsoclonus-Myoclonus Syndrome DOI: http://dx.doi.org/10.3126/ajms.v2i2.3536 Asian Journal of Medical Sciences 2 (2011) 110-112

A Clinical Overview of Systemic Lupus Erythematosus in Childhood

1993 ◽  
Vol 14 (5) ◽  
pp. 194-201
Author(s):  
Bianca A. Lang ◽  
Earl D. Silverman
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Severe Disease ◽  
Diagnostic System ◽  
Autoimmune Disorder ◽  
The United States ◽  
Classification Criteria ◽  
Systemic Lupus ◽  
Multisystem Disease ◽  
Organ Systems

Systemic lupus erythematosus (SLE) is an autoimmune disorder resulting in inflammation of multiple organ systems. Although SLE is not common in children, it must be considered in the differential diagnosis of any child who has multisystem disease. The onset of SLE in children may be acute, with severe disease affecting one or more major organ systems, or it may be insidious, with intermittent symptoms of fever, malaise, rashes, arthritis, or pleuritis. SLE also must be considered if a child is found to have a positive antinuclear antibody (ANA) test result. Although almost all children who have SLE have a positive result, this laboratory test alone does not establish the diagnosis of SLE. Classification Criteria Eleven disease manifestations are included in the revised classification criteria for SLE established by the American College of Rheumatology (Table 1). These criteria were established as a classification tool to guide in selecting patients for clinical and laboratory studies rather than as a diagnostic system. Nevertheless, they have proven useful in the assessment of both pediatric and adult patients who may or may not have SLE. Epidemiology Childhood onset of SLE accounts for approximately 20% of all cases. The annual incidence in the United States is approximately 0.6 cases per 100 000 total population, with higher rates found in the African-American, Oriental, and Hispanic populations.

Familial Autoimmunity in Systemic Sclerosis — Results of a French-based Case-Control Family Study

2012 ◽  
Vol 39 (3) ◽  
pp. 532-538 ◽  
Author(s):  
EUGÉNIE KOUMAKIS ◽  
PHILIPPE DIEUDÉ ◽  
JÉRÔME AVOUAC ◽  
ANDRÉ KAHAN ◽  
YANNICK ALLANORE ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Autoimmune Disease ◽  
Autoimmune Diseases ◽  
Lupus Erythematosus ◽  
Familial Aggregation ◽  
Connective Tissue Diseases ◽  
Case Control ◽  
Self Report ◽  
Retrospective Case ◽  
First Degree Relatives

Objective.To assess the prevalence of autoimmune diseases in first-degree relatives of patients with systemic sclerosis (SSc), and to compare those results with control families in order to identify patterns of autoimmune diseases in relatives.Methods.A retrospective case-control postal questionnaire survey was performed in France to recruit patients with SSc belonging to an association of patients with SSc and unrelated age-matched and sex-matched controls. Each participant was asked to self-report on the existence of autoimmune diseases in their first-degree relatives. The prevalence of autoimmune diseases in the families of patients with SSc was compared with the corresponding prevalence in the families of controls.Results.A total of 121 families out of 373 (32.4%) with a member having SSc reported at least 1 autoimmune disease in 1 or more first-degree relatives. The most frequent autoimmune diseases in SSc families when adjusted for family size were autoimmune thyroid disease (AITD; 4.9%), rheumatoid arthritis (4.1%), psoriasis (3.9%), and type 1 diabetes mellitus (2.9%). Compared with control families, AITD and connective tissue diseases (SSc, systemic lupus erythematosus, or Sjögren’s syndrome) were more likely to occur in families with SSc (p = 0.01 and p = 0.01, respectively), with OR of 3.20 (95% CI 1.25–8.18) and 5.20 (95% CI 1.22–21.8). In contrast, inflammatory bowel disease was less likely to occur within families with SSc (p = 0.02, OR 0.29, 95% CI 0.11–0.80). In addition, the coexistence of more than 1 autoimmune disease in the index SSc case was associated with familial aggregation of autoimmune diseases.Conclusion.Our results show that autoimmune diseases cluster within families of patients with SSc. This supports the notion that these diseases might arise on a shared genetic basis underlying several autoimmune phenotypes.

scholarly journals Innate Immunity and Biological Therapies for the Treatment of Sjögren’s Syndrome

2020 ◽  
Vol 21 (23) ◽  
pp. 9172
Author(s):  
Amrita Srivastava ◽  
Helen P. Makarenkova
Keyword(s):  
Sjögren’S Syndrome ◽  
Immune Cells ◽  
Lupus Erythematosus ◽  
Sjögren's Syndrome ◽  
Autoimmune Disorder ◽  
Sjogren’S Syndrome ◽  
The United States ◽  
Sjogren's Syndrome ◽  
Dry Eyes ◽  
Sjögren‘S Syndrome

Sjögren’s syndrome (SS) is a systemic autoimmune disorder affecting approximately 3% of the population in the United States. This disease has a female predilection and affects exocrine glands, including lacrimal and salivary glands. Dry eyes and dry mouths are the most common symptoms due to the loss of salivary and lacrimal gland function. Symptoms become more severe in secondary SS, where SS is present along with other autoimmune diseases like systemic lupus erythematosus, systemic sclerosis, or rheumatoid arthritis. It is known that aberrant activation of immune cells plays an important role in disease progression, however, the mechanism for these pathological changes in the immune system remains largely unknown. This review highlights the role of different immune cells in disease development, therapeutic treatments, and future strategies that are available to target various immune cells to cure the disease.

scholarly journals Familial aggregation of myocardial infarction and coaggregation of myocardial infarction and autoimmune disease: a nationwide population-based cross-sectional study in Taiwan

BMJ Open ◽  
2019 ◽  
Vol 9 (3) ◽  
pp. e023614
Author(s):  
Chun-Li Wang ◽  
Chang-Fu Kuo ◽  
Yung-Hsin Yeh ◽  
Mei-Yun Hsieh ◽  
Chi-Tai Kuo ◽  
...  
Keyword(s):  
Myocardial Infarction ◽  
Autoimmune Disease ◽  
General Population ◽  
Environmental Factors ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Degree Relative ◽  
Cross Sectional ◽  
First Degree Relatives ◽  
History Of

ObjectiveThis study examined how a history of myocardial infarction (MI) in a person’s first-degree relatives affects that person’s risk of developing MI and autoimmune diseases.DesignNationwide population-based cross-sectional studySettingAll healthcare facilities in Taiwan.ParticipantsA total of 24 361 345 individuals were enrolled.MethodsUsing data from the National Health Insurance Research Database in Taiwan, we conducted a nationwide cross-sectional study of data collected from all beneficiaries in the Taiwan National Health Insurance system in 2015, of whom 259 360 subjects had at least one first-degree relative affected by MI in 2015. We estimated the absolute risks and relative risks (RRs) of MI and autoimmune disease in those subjects, and the relative contribution of genetic and environmental factors to their MI susceptibility.ResultsThe absolute risks of MI for subjects with at least one affected first-degree relative and the general population were 0.87% and 0.56%, respectively, in 2015. Patients with affected first-degree relatives were significantly associated with a higher RR of MI (1.76, 95% CI: 1.68 to 1.85) compared with the general population. There was no association with a higher RR of autoimmune disease. The sibling, offspring and parental MI history conferred RRs (95% CI) for MI of 2.35 (1.96 to 2.83), 2.21 (2.05 to 2.39) and 1.60 (1.52 to 1.68), respectively. The contributions of heritability, shared environmental factors and non-shared environmental factors to MI susceptibility were 19.6%, 3.4% and 77.0%, respectively.ConclusionsIndividuals who have first-degree relatives with a history of MI have a higher risk of developing MI than the general population. Non-shared environmental factors contributed more significantly to MI susceptibility than did heritability and shared environmental factors. A family history of MI was not associated with an increased risk of autoimmune disease.

Immune Dysregulation after Hematopoietic Stem Cell Transplantation for Autoimmune Diseases Leading to Development of a Second Autoimmune Disorder: Role of Conditioning Regimen Used?.

Blood ◽  
2006 ◽  
Vol 108 (11) ◽  
pp. 760-760
Author(s):  
Yvonne Loh ◽  
Yu Oyama ◽  
Laisvyde Statkute ◽  
Kathleen Quigley ◽  
Kimberly Yaung ◽  
...  
Keyword(s):  
Stem Cell ◽  
Autoimmune Disease ◽  
Autoimmune Diseases ◽  
Lupus Erythematosus ◽  
Conditioning Regimen ◽  
Autoimmune Disorder ◽  
Immune Dysregulation ◽  
Hematopoietic Stem ◽  
Autoimmune Cytopenias ◽  
Disease Specific

Abstract Secondary autoimmune disorders following hematopoietic stem cell transplantation (HSCT) for malignancies occur at a reported frequency of 2 to 5%. Patients undergoing HSCT for autoimmune disorders may however have an added propensity to this complication, given the genetic predisposition to autoimmunity. Therefore, we undertook a retrospective analysis of all patients who underwent an autologous HSCT (auto−HSCT) for an autoimmune disease to determine the occurrence of a second autoimmune disorder, its nature, outcome and risk factors. In all, 154 patients underwent auto−HSCT for various autoimmune diseases in the period from August 1996 to March 2006. The peripheral blood stem cell product was either CD34−selected (n=87) or unmanipulated (n=67), depending on disease−specific protocols. The conditioning regimens consisted of various combinations of cyclophosphamide with either antithymocyte globulin (ATG) or alemtuzumab, or cyclophosphamide with intravenous busulfan or total body irradiation, again depending on disease−specific protocols. The autoimmune diseases represented were systemic lupus erythematosus (SLE) (n=60, 38.9%), systemic sclerosis (SSc) (n=13, 8.4%), multiple sclerosis (MS) (n=42, 27.3 %), rheumatoid arthritis (n=6, 3.9%), Crohn’s disease (n=20, 13.0%) and others (n=13, 8.4%). There were 5 patients (2 with SLE, one each with MS, SLE and SSc) who developed an autoimmune disorder distinct from their underlying autoimmune disease at a median of 5 months (2 to 30 months) after HSCT. The frequency of a secondary autoimmune disease was 3 of 24 among patients receiving alemtuzumab, 2 of 102 among those receiving ATG and none (0 of 28) of those who received neither of these lympho−depleting antibodies (p=0.018). The difference between the frequency of this complication was also significantly higher among those receiving alemtuzumab compared to ATG (p=0.017). The frequency of a secondary autoimmune disease among those who received a CD34−selected graft was 2 of 87 versus 3 of 67 of those who received unselected stem cells (p=0.449). Two patients with SLE who received an ATG−containing conditioning regimen, developed acquired factor VIII inhibitors with severe bleeding. One patient each with MS, SSc and SLE, who received an alemtuzumab−containing conditioning regimen, developed severe autoimmune cytopenias. The 5 patients required multiple immunosuppressants to control the secondary autoimmune disorder. ATG and alemtuzumab induce a protracted post−HSCT lymphopenia, with particularly delayed reconstitution in T cell function. The resultant immune dysregulation in an autoimmune−prone patient may predispose to a second autoimmune disease. The increased likelihood of this complication seen with alemtuzumab recommends against its use in auto−HSCT for autoimmune disease. Conditioning Regimen and Occurrence of Secondary Autoimmune Disease Regimen Patients Treated (n) Primary Autoimmune Disease Secondary Autoimmune Disease/number Cy:Cyclophosphamide; rATG:rabbit antithymocyte globulin; eATG:equine ATG; Al:Alemtuzumab; Bu:IV Busufan; SLE:systemic lupus erythematosus; SSc:systemic sclerosis; CD:Crohn’s disease; MS:multiple sclerosis; RA:rheumatoid arthritis Cy/rATG 51 SLE, SSc, CD, MS, others None Cy/eATG 51 SLE Acquired FVIII inhibitor (n=2) Cy/Al 24 MS, SLE Autoimmune cytopenias (n=3) Cy/TBI 22 MS None Bu/Cy 6 RA None

Genetic dissection of systemic autoimmune disease in Nrf2-deficient mice

2004 ◽  
Vol 18 (3) ◽  
pp. 261-272 ◽  
Author(s):  
Jiang Li ◽  
Thor D. Stein ◽  
Jeffrey A. Johnson
Keyword(s):  
Oxidative Stress ◽  
Autoimmune Disease ◽  
Lupus Erythematosus ◽  
Expression Profiles ◽  
Gene Expression Profiles ◽  
Autoimmune Disorder ◽  
Multiple Organ ◽  
Systemic Autoimmune Disease ◽  
Lipid Peroxidation Product ◽  
Antioxidant Genes

Systemic lupus erythematosus (SLE) is an autoimmune disorder with immune-complex deposition that affects multiple organs. Previous studies have suggested the involvement of oxidative stress and apoptosis in SLE, but no clear link to etiology has been established. Here we show that mice deficient in a transcription factor responsible for controlling the expression of numerous detoxification and antioxidant genes develop an autoimmune disease with multiple organ pathologies that closely resembles human SLE. Aged female mice with a knockout of nuclear factor, erythroid-derived 2, like 2 (nrf2) are prone to develop antibodies against double-stranded DNA and the Smith antigen as well as IgG, IgM, and C3 deposition in kidney, liver, heart, and brain. Prior to the development of autoimmune antibodies and organ pathology, oxidative damage occurs in the liver and kidney as indicated by the increased levels of the DNA oxidation marker 8-hydroxydeoxyguanosine and the later increase in the lipid peroxidation product malondialdehyde. Gene expression profiles demonstrate an early decrease in numerous antioxidant and detoxification genes in the livers and altered levels of cytokines and T and B cell-specific genes in the spleens of nrf2 knockout mice. These data strongly suggest that a deficiency in detoxification and increased oxidative stress can result in the development of a systemic autoimmune disease.

Adult systemic lupus erythematosus in Egypt: The nation-wide spectrum of 3661 patients and world-wide standpoint

Lupus ◽  
2021 ◽  
pp. 096120332110142
Author(s):  
Tamer A Gheita ◽  
Rasha Abdel Noor ◽  
Esam Abualfadl ◽  
Osama S Abousehly ◽  
Iman I El-Gazzar ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Age Of Onset ◽  
Wide Spectrum ◽  
Age At Onset ◽  
Disease Onset ◽  
Clinical Manifestations ◽  
Population Based ◽  
Systemic Lupus ◽  
Cross Sectional

Objective The aim of this study was to present the epidemiology, clinical manifestations and treatment pattern of systemic lupus erythematosus (SLE) in Egyptian patients over the country and compare the findings to large cohorts worldwide. Objectives were extended to focus on the age at onset and gender driven influence on the disease characteristics. Patients and method This population-based, multicenter, cross-sectional study included 3661 adult SLE patients from Egyptian rheumatology departments across the nation. Demographic, clinical, and therapeutic data were assessed for all patients. Results The study included 3661 patients; 3296 females and 365 males (9.03:1) and the median age was 30 years (17–79 years), disease duration 4 years (0–75 years) while the median age at disease onset was 25 years (4–75 years). The overall estimated prevalence of adult SLE in Egypt was 6.1/100,000 population (1.2/100,000 males and 11.3/100,000 females).There were 316 (8.6%) juvenile-onset (Jo-SLE) and 3345 adult-onset (Ao-SLE). Age at onset was highest in South and lowest in Cairo (p < 0.0001). Conclusion SLE in Egypt had a wide variety of clinical and immunological manifestations, with some similarities with that in other nations and differences within the same country. The clinical characteristics, autoantibodies and comorbidities are comparable between Ao-SLE and Jo-SLE. The frequency of various clinical and immunological manifestations varied between gender. Additional studies are needed to determine the underlying factors contributing to gender and age of onset differences.

scholarly journals AB1043 AWARENESS OF THYROID EYE DISEASE, AN AUTOIMMUNE CONDITION, AMONG RHEUMATOLOGISTS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1813.1-1813
Author(s):  
B. Lamoreaux ◽  
M. Francis-Sedlak ◽  
R. Holt ◽  
J. Rosenbaum
Keyword(s):  
Rheumatoid Arthritis ◽  
Lupus Erythematosus ◽  
Granulomatosis With Polyangiitis ◽  
The United States ◽  
Thyroid Eye Disease ◽  
Eye Disease ◽  
Infusion Therapy ◽  
Graves Disease ◽  
Ocular Motility ◽  
Referral Patterns

Background:Autoimmune inflammatory conditions of the eye may be associated with rheumatic diseases such as rheumatoid arthritis, systemic lupus erythematosus, and granulomatosis with polyangiitis. This is also observed with thyroid eye disease (TED). Loss of immune tolerance to the thyroid stimulating hormone receptor has thyroidal consequences and nearly 40% of patients with Graves’ disease also have clinically evident Graves’ orbitopathy or TED.1TED results from tissue inflammation that causes retro orbital fat expansion2and extraocular muscle enlargement2and stiffening.3Because the orbital cavity is bony and of limited volume, proptosis and, in severe cases, optic nerve compression, can result. In many patients, muscle changes also cause ocular motility issues and double-vision. Because TED can have a similar presentation to other inflammatory orbital diseases (e.g., granulomatosis with polyangiitis) and Graves’ disease patients frequently have other autoimmune conditions (10% of Graves’s patients also have rheumatoid arthritis),4rheumatologists are likely to care for, or even diagnose, patients with TED.Objectives:This analysis sought to understand rheumatologists’ knowledge, and degree of participation in the treatment, of TED including referral patterns from ophthalmologists and endocrinologists for infusion therapies.Methods:Rheumatologists practicing in the United States attended an educational session and agreed to complete a 12-item survey regarding TED awareness, referral patterns, and management.Results:Of the 47 rheumatologists surveyed, 45 (96%) were familiar with TED. Ten (21%) physicians reported managing patients with TED, but the majority of physicians (62%) reported that they co-managed other autoimmune diseases in patients who also had TED. Additionally, 98% and 64% of polled rheumatologists had received referrals from ophthalmologists and endocrinologists, respectively, for autoimmune disease management or infusion therapy. Ophthalmology referrals for intravenous (IV) medication administration were most frequently for biologics (82%), but some referrals were also made for corticosteroids (2%) or other medication (13%) infusions. Only 23% of rheumatologists had administered a biologic specifically for TED (rituximab: 17%, tocilizumab: 2%, other: 4%), but 89% expressed an interest in administering a TED-specific monoclonal antibody therapy, awaiting FDA approval.Conclusion:Nearly all surveyed rheumatologists were aware of the signs and symptoms of TED, although most did not actively manage or administer medication for TED. Given the high level of interest in infusing novel, TED-specific biologics, rheumatologists may become an integral part of TED patient management with the approval of a new biologic, teprotumumab, for thyroid eye disease.References:[1]Bartley GB, et al.Am J Ophthalmol1996;121:284-90.[2]Forbes G, et al.AJNR Am J Neuroradiol1986;7:651-656.[3]Simonsz HJ, et al.Strabismus1994;2:197-218.[4]Cardenas Roldan J, et al.Arthritis2012 2012;864907.Disclosure of Interests:Brian LaMoreaux Shareholder of: Horizon Therapeutics, Employee of: Horizon Therapeutics, Megan Francis-Sedlak Shareholder of: Horizon Therapeutics, Employee of: Horizon Therapeutics, Robert Holt Shareholder of: Horizon Therapeutics, Employee of: Horizon Therapeutics, James Rosenbaum Consultant of: AbbVie, Corvus, Eyevensys, Gilead, Novartis, Janssen, Roche, UCB Pharma; royalties from UpToDate

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
Keyword(s):  
South Carolina ◽  
Lupus Erythematosus ◽  
Preliminary Data ◽  
Autoimmune Disorder ◽  
Medical Community ◽  
Small Samples ◽  
Control Board ◽  
Prospective Survey ◽  
And Control ◽  
The Impact

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.

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