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1

H, Phillips Robert. Coping with lupus : A guide to living with lupus for you and your family. Garden City Park, N.Y : Avery Pub. Group, 1991.

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2

Guo, Yueying. Hong ban xing lang chuang shi pu. 8e éd. Taibei Shi : Er yu wen hua shi ye you xian gong si, 2003.

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3

Permut, Joanna Baumer. Embracing the wolf : A lupus victim and her family learn to live with chronic disease. Atlanta, Ga : Cherokee Pub. Co., 1989.

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4

Sheerin, Fintan. Systemic lupus erythematosus : The wolf among the lambs : a comprehensive study of all aspects of the disease, and of the nursing care required by one patient. Dublin : The author, 1991.

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5

Watkins, Steven R. Flannery O'Connor and Teilhard de Chardin : A journey together towards hope and understanding about life. New York : Peter Lang, 2009.

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6

1933-, Voss Edward W., dir. Anti-DNA antibodies in SLE. Boca Raton, Fla : CRC Press, 1988.

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7

Berden, Jo H. M., et Jack F. M. Wetzels. Immunological investigation of the patient with renal disease. Sous la direction de Christopher G. Winearls. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199592548.003.0017.

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Laboratory techniques (electrophoresis, indirect immunofluorescence, ELISA, and immunoblotting) required for immunological investigation of the patient with renal disease are described. Renal disease-related aspects of immunoglobulins (immunoglobulin A, paraproteins, cryoglobulins), complement, antinuclear antibodies, anti-C1q antibodies, antineutrophil cytoplasmic antibodies, anti-glomerular basement membrane antibodies, antipodocyte antibodies, antiphospholipid antibodies, and antimicrobial responses (streptococci, hepatitis C, hepatitis B) are reviewed. Laboratory assays which evaluate the immune response, in particular the identification of (auto)-antibodies are valuable tools in establishing a diagnosis and/or monitoring of the activity of the disease. Guidelines are given for immunological studies in patients with specific renal syndromes including nephrotic syndrome, rapidly progressive glomerulonephritis, systemic lupus erythematosus, and thrombotic microangiopathy.
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8

Murphy, Claire Louise, Yiannis Ioannou et Nicola Ambrose. Juvenile systemic lupus erythematosus. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780198739180.003.0008.

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Juvenile-onset systemic lupus erythematosus (JSLE) is similar to adult-onset SLE, but there are distinct differences in clinical features, serology, and management requirements. It is more aggressive than adult-onset SLE with frequent renal and haematological manifestations and higher mortality rates. The cause of JSLE is unknown but appears to be multifactorial with genetic, immunological, hormonal, and environmental influences. Macrophage activation syndrome is a potentially life-threatening complication, and may mimic the underlying disease or be confused with sepsis. Transferring care from paediatric to adult care can be a difficult milestone and should be tailored to the individual patient. Management requires a multisystemic, holistic approach with recognition of psychosocial factors that occur during normal childhood and adolescence. International collaboration and further research is needed to optimize care for these patients.
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9

Josef, S. M. D. Smolen, et C. C. Zielinski. Systemic Lupus Erythematosus : Clinical and Experimental Aspects. Springer-Verlag, 1987.

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10

Systemic lupus erythematosus : Clinical and experimental aspects. Berlin : Springer-Verlag, 1987.

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11

Condon, Marie, Philippa Dodd et Liz Lightstone. The patient with systemic lupus erythematosus. Sous la direction de Giuseppe Remuzzi. Oxford University Press, 2015. http://dx.doi.org/10.1093/med/9780199592548.003.0162.

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AbstractSystemic lupus erythematosus (SLE) is a chronic, relapsing, inflammatory, often febrile multisystemic disorder, characterized by involvement of the skin, joints, visceral organs, and serosal membranes. Symptoms and manifestations vary widely over an unpredictable relapsing and remitting course.The presentation of SLE can range from mild forms to severe disease requiring hospitalization. Most commonly it manifests as a combination of constitutional symptoms, particularly fatigue and fever, with cutaneous, musculoskeletal, mild haematological, and serological involvement; however, when renal, haematological or central nervous system disease predominate it can be more severe, even life-threatening. There is a tendency for the disease pattern present at the time of onset to prevail during subsequent exacerbations.Investigating SLE depends to an extent on the presentation of the individual. However a number of haematological, biochemical and immunological investigations provide useful diagnostic information, either for the disease itself or in context of organ system involvement, and should be performed routinely.The presence of lupus nephritis should be considered in any lupus patient with impaired kidney function, proteinuria, hypertension, or an active urine sediment; the gold standard investigation in this context is a kidney biopsy. Glomerular immune complex deposition is the hallmark of lupus nephritis and underpins the International society of Nephrology/Renal Pathology Society classification of lupus nephritis.The diagnosis of SLE is based upon the presence of clinical and/or laboratory features and immunological markers that meet the various published diagnostic criteria. In 2012, lupus nephritis identified on kidney biopsy became an independent diagnostic criterion.This chapter goes through the clinical manifestations, investigations (including a detailed look at the kidney biopsy) and a review of the latest published diagnostic criteria.
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12

Tsokos, George. Systemic Lupus Erythematosus : Basic, Applied and Clinical Aspects. Elsevier Science & Technology Books, 2020.

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13

Tsokos, George. Systemic Lupus Erythematosus : Basic, Applied and Clinical Aspects. Elsevier Science & Technology, 2020.

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14

Tsokos, George. Systemic Lupus Erythematosus : Basic, Applied and Clinical Aspects. Elsevier Science & Technology Books, 2016.

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15

Neuropsychiatric Systemic Lupus Erythematosus : Pathogenesis, Clinical Aspects and Treatment. Springer, 2018.

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16

Hirohata, Shunsei. Neuropsychiatric Systemic Lupus Erythematosus : Pathogenesis, Clinical Aspects and Treatment. Springer, 2018.

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17

Turner, Irvine. Systemic Lupus Erythematosus : Risk Factors, Treatment Options and Clinical Aspects. Nova Science Publishers, Incorporated, 2017.

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18

Kammer, Gary M. Lupus : Molecular and Cellular Pathogenesis (Contemporary Immunology). Humana Press, 1999.

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19

Despite Lupus How To Live Well With A Chronic Illness. Booksurge Publishing, 2009.

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20

Batmanghelidj, Fereydoon. ABC of Asthma, Allergies and Lupus : Eradicate Asthma - Now ! Global Health Solutions, 2000.

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21

Isaacs, Anthony, et David Isenberg. Laboratory tests and investigations. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780198739180.003.0005.

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In this chapter an overview is provided of the investigations used in patients with systemic lupus erythematosus (SLE); these establish the abnormalities that can be found in each organ/system. Lupus is a very heterogeneous condition, affecting virtually every organ/system. In consequence, numerous investigations and tests are used to help make the diagnosis and define the extent of the organ/system involvement. The chapter is divided into investigations of the effects of SLE on the following systems: haematological, immunological, biochemical, renal, cardiovascular, pulmonary, gastroenterological, neurological, dermatological, and musculoskeletal. These targeted organ/system-based investigations can then be used to assess ongoing disease activity or the consequence of damage caused by previously active disease.
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22

Berlit, Peter, et Patricia Moore. Vasculitis, Rheumatic Disease and the Nervous System. Springer, 2011.

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23

Peter, Berlit, et Moore P, dir. Vasculitis, rheumatic disease, and the nervous system. Berlin : Springer-Verlag, 1993.

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24

J, Carlson-Newberry Sydne, Southern California Evidence-Based Practice Center/RAND. et United States. Agency for Healthcare Research and Quality., dir. Effects of omega-3 fatty acids on lipids and glycemic control in type II diabetes and the metabolic syndrome and on inflammatory bowel disease, rheumatoid arthritis, renal disease, systemic lupus erythematosus, and osteoporosis. Rockville, MD : Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, 2004.

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25

Hertl, Michael. Autoimmune Diseases of the Skin : Pathogenesis, Diagnosis, Management. 2e éd. Springer, 2005.

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26

Hertl, Michael. Autoimmune Diseases of the Skin : Pathogenesis, Diagnosis, Management. Springer, 2011.

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27

Hertl, Michael. Autoimmune Diseases of the Skin : Pathogenesis, Diagnosis, Management. Springer, 2016.

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28

Hertl, Michael. Autoimmune Diseases of the Skin : Pathogenesis, Diagnosis, Management. Springer, 2001.

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29

Strand, Vibeke, Jeremy Sokolove et Alvina D. Chu. Design of clinical trials in rheumatology. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199642489.003.0030.

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Development of new therapies for rheumatic diseases requires a series of randomized controlled trials (RCTs) progressing from phase 1, 'first-in-human' to generate initial safety, pharmacokinetic (PK) and pharmacodynamic (PD) data; to phase 2, proof of concept for efficacy with safety and PK/PD data; and phase 3, designed to demonstrate definitive efficacy and safety to support regulatory approval. Important aspects of RCT designs include sample size estimations, treatment allocation, rescue, blinding, and statistical analyses of prespecified endpoints to preserve trial integrity. Over the past 15 years, significant progress has been made in the design of RCTs in rheumatoid arthritis (RA). Similarly, development and validation of composite outcome measures in psoriatic arthritis, ankylosing spondylitis, gout, and osteoarthritis have furthered trial design and treatment approvals. RCTs in systemic lupus erythematosus and other multisystem, heterogeneous diseases pose more challenges. Trial design will continue to evolve as promising therapies are introduced into the clinic.
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30

Strand, Vibeke, Jeremy Sokolove et Alvina D. Chu. Design of clinical trials in rheumatology. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199642489.003.0030_update_001.

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Development of new therapies for rheumatic diseases requires a series of randomized controlled trials (RCTs) progressing from phase 1, ’first-in-human’ to generate initial safety, pharmacokinetic (PK) and pharmacodynamic (PD) data; to phase 2, proof of concept for efficacy with safety and PK/PD data; and phase 3, designed to demonstrate definitive efficacy and safety to support regulatory approval. Important aspects of RCT designs include sample size estimations, treatment allocation, rescue, blinding, and statistical analyses of prespecified endpoints to preserve trial integrity. Over the past 15 years, significant progress has been made in the design of RCTs in rheumatoid arthritis (RA). Similarly, development and validation of composite outcome measures in psoriatic arthritis, ankylosing spondylitis, gout, and osteoarthritis have furthered trial design and treatment approvals. RCTs in systemic lupus erythematosus and other multisystem, heterogeneous diseases pose more challenges. Trial design will continue to evolve as promising therapies are introduced into the clinic.
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31

Strand, Vibeke, Jeremy Sokolove et Alvina D. Chu. Design of clinical trials in rheumatology. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199642489.003.0030_update_002.

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Development of new therapies for rheumatic diseases requires a series of randomized controlled trials (RCTs) progressing from phase 1, ’first-in-human’ to generate initial safety, pharmacokinetic (PK) and pharmacodynamic (PD) data; to phase 2, proof of concept for efficacy with safety and PK/PD data; and phase 3, designed to demonstrate definitive efficacy and safety to support regulatory approval. Important aspects of RCT designs include sample size estimations, treatment allocation, rescue, blinding, and statistical analyses of prespecified endpoints to preserve trial integrity. Over the past 15 years, significant progress has been made in the design of RCTs in rheumatoid arthritis (RA). Similarly, development and validation of composite outcome measures in psoriatic arthritis, ankylosing spondylitis, gout, and osteoarthritis have furthered trial design and treatment approvals. RCTs in systemic lupus erythematosus and other multisystem, heterogeneous diseases pose more challenges. Trial design will continue to evolve as promising therapies are introduced into the clinic.
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32

Price, Elizabeth J., et Anwar R. Tappuni, dir. Oxford Textbook of Sjögren's Syndrome. Oxford University Press, 2021. http://dx.doi.org/10.1093/med/9780198806684.001.0001.

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The Oxford Textbook of Sjögren’s Syndrome is an authoritative textbook, rich with valuable illustrations and figures, providing a practical guide to diagnosing and managing all aspects of this condition. Sjögren’s syndrome is a chronic, immune-mediated condition typically presenting in women in their fifth or sixth decade. With increased awareness and improvement in diagnostic tests, younger women and occasionally men are now being diagnosed with this condition. Frequently, Sjögren’s syndrome occurs in association with other autoimmune diseases, usually rheumatoid arthritis, systemic lupus erythematosus, or scleroderma. The hallmark of this condition is dryness of the eyes and mouth, but many patients have systemic effects that can be debilitating, including fatigue, peripheral neuropathy, and lung damage. It has potentially serious long-term complications, including a higher risk of developing lymphoma and foetal congenital heart block. Diagnosis of the condition can be challenging as the presenting symptoms are variable. Management of the condition can be complex as the course of the disease is unpredictable and the available therapy is mainly symptomatic, with no known cure as yet. Experts in the condition from around the world have contributed to this book to provide the most up-to-date information on pathophysiology, classification criteria, diagnostic tests, systemic manifestations of the disease, and emerging therapeutic options. The publication of this book coincides with a period of increased interest in Sjögren’s within the scientific, medical, and pharmacological worlds.
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33

Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2013. http://dx.doi.org/10.1093/med/9780199642489.003.0035.

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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient's body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient's life and integrate the patients' perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients' long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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34

Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199642489.003.0035_update_002.

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Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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35

Minden, Kirsten. Outcomes of paediatric rheumatic disease. Oxford University Press, 2018. http://dx.doi.org/10.1093/med/9780199642489.003.0035_update_003.

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Résumé :
Paediatric rheumatic illnesses are among the most common chronic diseases in children and adolescents. These illnesses have important impacts on patient’s body functions and structures, activities, and social participation. Knowledge about the effect and consequences of these diseases is necessary to formulate appropriate aims of treatments. The multidimensional outcomes of paediatric rheumatic diseases and their measurement are reviewed in this chapter. Outcome measurement is complex in patients who have growing needs and changing expectations as they develop, especially in chronic conditions that have a variable and often unpredictable course, such as juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and juvenile dermatomyositis. Considerable work has been conducted recently in an effort to better define and value global outcomes for these patients. New and reliable outcome measures have been developed to capture all aspects of the patient’s life and integrate the patients’ perspective. Existing outcome studies of paediatric rheumatic diseases have consistently shown, even though differing in their methodology, that patient outcomes have improved over the last decade. More patients with chronic inflammatory rheumatic conditions survive into adulthood, and patients’ long-term health, functional, and quality of life outcomes have improved. However, outcomes are still less than ideal. More than one-half of the patients with paediatric rheumatic diseases have ongoing active disease in early adulthood. Over one-third have evidence of disability and organ damage, with each underlying disease being associated with specific complications. Clearly, given the inherent potential for disability, morbidity, even mortality, young people with paediatric-onset rheumatic diseases require ongoing medical care into adulthood.
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