Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort
Identifieur interne : 001A82 ( Istex/Corpus ); précédent : 001A81; suivant : 001A83Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort
Auteurs : Louise Watson ; Valentina Leone ; Clarissa Pilkington ; Kjell Tullus ; Satyapal Rangaraj ; Janet E. Mcdonagh ; Janet Gardner-Medwin ; Nick Wilkinson ; Phil Riley ; Jane Tizard ; Kate Armon ; Manish D. Sinha ; Yiannis Ioannou ; Neil Archer ; Kathryn Bailey ; Joyce Davidson ; Eileen M. Baildam ; Gavin Cleary ; Liza J. Mccann ; Michael W. BeresfordSource :
- Arthritis & Rheumatism [ 0004-3591 ] ; 2012-07.
Abstract
Objective: The UK Juvenile‐Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort. Methods: Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n = 198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE. Results: Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4–14.5 years). Male patients were younger than female patients (P < 0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non‐Caucasian UK patients (P < 0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1. Conclusion: The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of disease‐associated damage could be seen.
Url:
DOI: 10.1002/art.34410
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<record><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><title xml:lang="en">Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title><author><name sortKey="Watson, Louise" sort="Watson, Louise" uniqKey="Watson L" first="Louise" last="Watson">Louise Watson</name><affiliation><mods:affiliation>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Leone, Valentina" sort="Leone, Valentina" uniqKey="Leone V" first="Valentina" last="Leone">Valentina Leone</name><affiliation><mods:affiliation>Great North Children's Hospital Foundation Trust, Newcastle‐upon‐Tyne, UK</mods:affiliation></affiliation></author><author><name sortKey="Pilkington, Clarissa" sort="Pilkington, Clarissa" uniqKey="Pilkington C" first="Clarissa" last="Pilkington">Clarissa Pilkington</name><affiliation><mods:affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Tullus, Kjell" sort="Tullus, Kjell" uniqKey="Tullus K" first="Kjell" last="Tullus">Kjell Tullus</name><affiliation><mods:affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Rangaraj, Satyapal" sort="Rangaraj, Satyapal" uniqKey="Rangaraj S" first="Satyapal" last="Rangaraj">Satyapal Rangaraj</name><affiliation><mods:affiliation>Nottingham Children's Hospital and Nottingham University Hospital NHS Trust, Nottingham, UK</mods:affiliation></affiliation></author><author><name sortKey="Mcdonagh, Janet E" sort="Mcdonagh, Janet E" uniqKey="Mcdonagh J" first="Janet E." last="Mcdonagh">Janet E. Mcdonagh</name><affiliation><mods:affiliation>Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK</mods:affiliation></affiliation></author><author><name sortKey="Gardner Edwin, Janet" sort="Gardner Edwin, Janet" uniqKey="Gardner Edwin J" first="Janet" last="Gardner-Medwin">Janet Gardner-Medwin</name><affiliation><mods:affiliation>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</mods:affiliation></affiliation></author><author><name sortKey="Wilkinson, Nick" sort="Wilkinson, Nick" uniqKey="Wilkinson N" first="Nick" last="Wilkinson">Nick Wilkinson</name><affiliation><mods:affiliation>The Children's Hospital, Oxford Radcliffe Hospital NHS Trust, Oxford, UK</mods:affiliation></affiliation></author><author><name sortKey="Riley, Phil" sort="Riley, Phil" uniqKey="Riley P" first="Phil" last="Riley">Phil Riley</name><affiliation><mods:affiliation>Royal Manchester Children's NHS Trust Hospital, Manchester, UK</mods:affiliation></affiliation></author><author><name sortKey="Tizard, Jane" sort="Tizard, Jane" uniqKey="Tizard J" first="Jane" last="Tizard">Jane Tizard</name><affiliation><mods:affiliation>Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK</mods:affiliation></affiliation></author><author><name sortKey="Armon, Kate" sort="Armon, Kate" uniqKey="Armon K" first="Kate" last="Armon">Kate Armon</name><affiliation><mods:affiliation>Jenny Lind Children's Hospital, Norfolk and Norwich University Hospital NHS Foundation Trust, Norfolk, UK</mods:affiliation></affiliation></author><author><name sortKey="Sinha, Manish D" sort="Sinha, Manish D" uniqKey="Sinha M" first="Manish D." last="Sinha">Manish D. Sinha</name><affiliation><mods:affiliation>Evelina Children's Hospital, Guy's and St. Thomas' NHS Foundation Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Ioannou, Yiannis" sort="Ioannou, Yiannis" uniqKey="Ioannou Y" first="Yiannis" last="Ioannou">Yiannis Ioannou</name><affiliation><mods:affiliation>University College London Hospitals NHS Foundation Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Archer, Neil" sort="Archer, Neil" uniqKey="Archer N" first="Neil" last="Archer">Neil Archer</name><affiliation><mods:affiliation>Musgrove Park Hospital, Taunton and Somerset NHS Foundation Trust, Taunton, UK</mods:affiliation></affiliation></author><author><name sortKey="Bailey, Kathryn" sort="Bailey, Kathryn" uniqKey="Bailey K" first="Kathryn" last="Bailey">Kathryn Bailey</name><affiliation><mods:affiliation>University Hospital Coventry and Warwickshire NHS Trust, Coventry, UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</mods:affiliation></affiliation></author><author><name sortKey="Davidson, Joyce" sort="Davidson, Joyce" uniqKey="Davidson J" first="Joyce" last="Davidson">Joyce Davidson</name><affiliation><mods:affiliation>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</mods:affiliation></affiliation></author><author><name sortKey="Baildam, Eileen M" sort="Baildam, Eileen M" uniqKey="Baildam E" first="Eileen M." last="Baildam">Eileen M. Baildam</name><affiliation><mods:affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Cleary, Gavin" sort="Cleary, Gavin" uniqKey="Cleary G" first="Gavin" last="Cleary">Gavin Cleary</name><affiliation><mods:affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Mccann, Liza J" sort="Mccann, Liza J" uniqKey="Mccann L" first="Liza J." last="Mccann">Liza J. Mccann</name><affiliation><mods:affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Beresford, Michael W" sort="Beresford, Michael W" uniqKey="Beresford M" first="Michael W." last="Beresford">Michael W. Beresford</name><affiliation><mods:affiliation>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation><affiliation><mods:affiliation>E-mail: m.w.beresford@liverpool.ac.uk</mods:affiliation></affiliation><affiliation><mods:affiliation>Correspondence address: Department of Women's and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Foundation Trust Hospital, Eaton Road, Liverpool L12 2AP, UK</mods:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:1B4F5A3B9D3D2B27CB230AF14296F24B56D29898</idno><date when="2012" year="2012">2012</date><idno type="doi">10.1002/art.34410</idno><idno type="url">https://api.istex.fr/ark:/67375/WNG-1N5K3F88-R/fulltext.pdf</idno><idno type="wicri:Area/Istex/Corpus">001A82</idno><idno type="wicri:explorRef" wicri:stream="Istex" wicri:step="Corpus" wicri:corpus="ISTEX">001A82</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main">Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title><author><name sortKey="Watson, Louise" sort="Watson, Louise" uniqKey="Watson L" first="Louise" last="Watson">Louise Watson</name><affiliation><mods:affiliation>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Leone, Valentina" sort="Leone, Valentina" uniqKey="Leone V" first="Valentina" last="Leone">Valentina Leone</name><affiliation><mods:affiliation>Great North Children's Hospital Foundation Trust, Newcastle‐upon‐Tyne, UK</mods:affiliation></affiliation></author><author><name sortKey="Pilkington, Clarissa" sort="Pilkington, Clarissa" uniqKey="Pilkington C" first="Clarissa" last="Pilkington">Clarissa Pilkington</name><affiliation><mods:affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Tullus, Kjell" sort="Tullus, Kjell" uniqKey="Tullus K" first="Kjell" last="Tullus">Kjell Tullus</name><affiliation><mods:affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Rangaraj, Satyapal" sort="Rangaraj, Satyapal" uniqKey="Rangaraj S" first="Satyapal" last="Rangaraj">Satyapal Rangaraj</name><affiliation><mods:affiliation>Nottingham Children's Hospital and Nottingham University Hospital NHS Trust, Nottingham, UK</mods:affiliation></affiliation></author><author><name sortKey="Mcdonagh, Janet E" sort="Mcdonagh, Janet E" uniqKey="Mcdonagh J" first="Janet E." last="Mcdonagh">Janet E. Mcdonagh</name><affiliation><mods:affiliation>Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK</mods:affiliation></affiliation></author><author><name sortKey="Gardner Edwin, Janet" sort="Gardner Edwin, Janet" uniqKey="Gardner Edwin J" first="Janet" last="Gardner-Medwin">Janet Gardner-Medwin</name><affiliation><mods:affiliation>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</mods:affiliation></affiliation></author><author><name sortKey="Wilkinson, Nick" sort="Wilkinson, Nick" uniqKey="Wilkinson N" first="Nick" last="Wilkinson">Nick Wilkinson</name><affiliation><mods:affiliation>The Children's Hospital, Oxford Radcliffe Hospital NHS Trust, Oxford, UK</mods:affiliation></affiliation></author><author><name sortKey="Riley, Phil" sort="Riley, Phil" uniqKey="Riley P" first="Phil" last="Riley">Phil Riley</name><affiliation><mods:affiliation>Royal Manchester Children's NHS Trust Hospital, Manchester, UK</mods:affiliation></affiliation></author><author><name sortKey="Tizard, Jane" sort="Tizard, Jane" uniqKey="Tizard J" first="Jane" last="Tizard">Jane Tizard</name><affiliation><mods:affiliation>Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK</mods:affiliation></affiliation></author><author><name sortKey="Armon, Kate" sort="Armon, Kate" uniqKey="Armon K" first="Kate" last="Armon">Kate Armon</name><affiliation><mods:affiliation>Jenny Lind Children's Hospital, Norfolk and Norwich University Hospital NHS Foundation Trust, Norfolk, UK</mods:affiliation></affiliation></author><author><name sortKey="Sinha, Manish D" sort="Sinha, Manish D" uniqKey="Sinha M" first="Manish D." last="Sinha">Manish D. Sinha</name><affiliation><mods:affiliation>Evelina Children's Hospital, Guy's and St. Thomas' NHS Foundation Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Ioannou, Yiannis" sort="Ioannou, Yiannis" uniqKey="Ioannou Y" first="Yiannis" last="Ioannou">Yiannis Ioannou</name><affiliation><mods:affiliation>University College London Hospitals NHS Foundation Trust, London, UK</mods:affiliation></affiliation></author><author><name sortKey="Archer, Neil" sort="Archer, Neil" uniqKey="Archer N" first="Neil" last="Archer">Neil Archer</name><affiliation><mods:affiliation>Musgrove Park Hospital, Taunton and Somerset NHS Foundation Trust, Taunton, UK</mods:affiliation></affiliation></author><author><name sortKey="Bailey, Kathryn" sort="Bailey, Kathryn" uniqKey="Bailey K" first="Kathryn" last="Bailey">Kathryn Bailey</name><affiliation><mods:affiliation>University Hospital Coventry and Warwickshire NHS Trust, Coventry, UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</mods:affiliation></affiliation></author><author><name sortKey="Davidson, Joyce" sort="Davidson, Joyce" uniqKey="Davidson J" first="Joyce" last="Davidson">Joyce Davidson</name><affiliation><mods:affiliation>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</mods:affiliation></affiliation></author><author><name sortKey="Baildam, Eileen M" sort="Baildam, Eileen M" uniqKey="Baildam E" first="Eileen M." last="Baildam">Eileen M. Baildam</name><affiliation><mods:affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Cleary, Gavin" sort="Cleary, Gavin" uniqKey="Cleary G" first="Gavin" last="Cleary">Gavin Cleary</name><affiliation><mods:affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Mccann, Liza J" sort="Mccann, Liza J" uniqKey="Mccann L" first="Liza J." last="Mccann">Liza J. Mccann</name><affiliation><mods:affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation></author><author><name sortKey="Beresford, Michael W" sort="Beresford, Michael W" uniqKey="Beresford M" first="Michael W." last="Beresford">Michael W. Beresford</name><affiliation><mods:affiliation>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</mods:affiliation></affiliation><affiliation><mods:affiliation>E-mail: m.w.beresford@liverpool.ac.uk</mods:affiliation></affiliation><affiliation><mods:affiliation>Correspondence address: Department of Women's and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Foundation Trust Hospital, Eaton Road, Liverpool L12 2AP, UK</mods:affiliation></affiliation></author></analytic><monogr></monogr><series><title level="j" type="main">Arthritis & Rheumatism</title><title level="j" type="alt">ARTHRITIS AND RHEUMATISM</title><idno type="ISSN">0004-3591</idno><idno type="eISSN">1529-0131</idno><imprint><biblScope unit="vol">64</biblScope><biblScope unit="issue">7</biblScope><biblScope unit="page" from="2356">2356</biblScope><biblScope unit="page" to="2365">2365</biblScope><biblScope unit="page-count">10</biblScope><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><date type="published" when="2012-07">2012-07</date></imprint><idno type="ISSN">0004-3591</idno></series></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0004-3591</idno></seriesStmt></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Objective: The UK Juvenile‐Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort. Methods: Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n = 198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE. Results: Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4–14.5 years). Male patients were younger than female patients (P < 0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non‐Caucasian UK patients (P < 0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1. Conclusion: The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of disease‐associated damage could be seen.</div></front></TEI><istex><corpusName>wiley</corpusName><keywords><teeft><json:string>lupus</json:string><json:string>cohort</json:string><json:string>erythematosus</json:string><json:string>pediatric</json:string><json:string>systemic lupus erythematosus</json:string><json:string>datum</json:string><json:string>jsle</json:string><json:string>disease activity</json:string><json:string>rheumatology</json:string><json:string>bilag</json:string><json:string>followup</json:string><json:string>jsle cohort study</json:string><json:string>rheumatol</json:string><json:string>organ involvement</json:string><json:string>mrcp</json:string><json:string>median</json:string><json:string>sledai</json:string><json:string>neurologic</json:string><json:string>corticosteroid</json:string><json:string>mbchb</json:string><json:string>female patient</json:string><json:string>nephritis</json:string><json:string>isenberg</json:string><json:string>ethnicity</json:string><json:string>clin</json:string><json:string>autoimmune</json:string><json:string>phenotype</json:string><json:string>systemic</json:string><json:string>renal</json:string><json:string>rheum</json:string><json:string>beresford</json:string><json:string>intravenous</json:string><json:string>american college</json:string><json:string>classification criterion</json:string><json:string>cyclophosphamide</json:string><json:string>mbbs</json:string><json:string>frcpch</json:string><json:string>male patient</json:string><json:string>foundation trust</json:string><json:string>arthritis rheum</json:string><json:string>family member</json:string><json:string>disease activity index</json:string><json:string>datum analysis</json:string><json:string>pediatric adaptation</json:string><json:string>present study</json:string><json:string>autoimmune disease</json:string><json:string>baseline</json:string><json:string>british isle lupus assessment group</json:string><json:string>clinical characteristic</json:string><json:string>renal involvement</json:string><json:string>family history</json:string><json:string>mycophenolate mofetil</json:string><json:string>cohort study</json:string><json:string>bilag index</json:string><json:string>caucasian</json:string><json:string>median time</json:string><json:string>criterion present</json:string><json:string>latest analysis</json:string><json:string>lupus patient</json:string><json:string>disease onset</json:string><json:string>study period</json:string><json:string>systemic lupus international</json:string><json:string>neurologic manifestation</json:string><json:string>median score</json:string><json:string>disease activity score</json:string><json:string>symptom onset</json:string><json:string>intravenous cyclophosphamide</json:string><json:string>damage index</json:string><json:string>organ damage</json:string><json:string>jsle study group</json:string><json:string>study group</json:string><json:string>foundation trust hospital</json:string><json:string>disease damage</json:string><json:string>pediatric systemic lupus erythematosus</json:string><json:string>arthritis</json:string><json:string>medication</json:string><json:string>juvenile</json:string></teeft></keywords><author><json:item><name>Louise Watson</name><affiliations><json:string>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</json:string></affiliations></json:item><json:item><name>Valentina Leone</name><affiliations><json:string>Great North Children's Hospital Foundation Trust, Newcastle‐upon‐Tyne, UK</json:string></affiliations></json:item><json:item><name>Clarissa Pilkington</name><affiliations><json:string>Great Ormond Street Hospital for Children NHS Trust, London, UK</json:string></affiliations></json:item><json:item><name>Kjell Tullus</name><affiliations><json:string>Great Ormond Street Hospital for Children NHS Trust, London, UK</json:string></affiliations></json:item><json:item><name>Satyapal Rangaraj</name><affiliations><json:string>Nottingham Children's Hospital and Nottingham University Hospital NHS Trust, Nottingham, UK</json:string></affiliations></json:item><json:item><name>Janet E. McDonagh</name><affiliations><json:string>Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK</json:string></affiliations></json:item><json:item><name>Janet Gardner‐Medwin</name><affiliations><json:string>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</json:string></affiliations></json:item><json:item><name>Nick Wilkinson</name><affiliations><json:string>The Children's Hospital, Oxford Radcliffe Hospital NHS Trust, Oxford, UK</json:string></affiliations></json:item><json:item><name>Phil Riley</name><affiliations><json:string>Royal Manchester Children's NHS Trust Hospital, Manchester, UK</json:string></affiliations></json:item><json:item><name>Jane Tizard</name><affiliations><json:string>Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK</json:string></affiliations></json:item><json:item><name>Kate Armon</name><affiliations><json:string>Jenny Lind Children's Hospital, Norfolk and Norwich University Hospital NHS Foundation Trust, Norfolk, UK</json:string></affiliations></json:item><json:item><name>Manish D. Sinha</name><affiliations><json:string>Evelina Children's Hospital, Guy's and St. Thomas' NHS Foundation Trust, London, UK</json:string></affiliations></json:item><json:item><name>Yiannis Ioannou</name><affiliations><json:string>University College London Hospitals NHS Foundation Trust, London, UK</json:string></affiliations></json:item><json:item><name>Neil Archer</name><affiliations><json:string>Musgrove Park Hospital, Taunton and Somerset NHS Foundation Trust, Taunton, UK</json:string></affiliations></json:item><json:item><name>Kathryn Bailey</name><affiliations><json:string>University Hospital Coventry and Warwickshire NHS Trust, Coventry, UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</json:string></affiliations></json:item><json:item><name>Joyce Davidson</name><affiliations><json:string>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</json:string></affiliations></json:item><json:item><name>Eileen M. Baildam</name><affiliations><json:string>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</json:string></affiliations></json:item><json:item><name>Gavin Cleary</name><affiliations><json:string>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</json:string></affiliations></json:item><json:item><name>Liza J. McCann</name><affiliations><json:string>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</json:string></affiliations></json:item><json:item><name>Michael W. Beresford</name><affiliations><json:string>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</json:string><json:string>E-mail: m.w.beresford@liverpool.ac.uk</json:string><json:string>Correspondence address: Department of Women's and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Foundation Trust Hospital, Eaton Road, Liverpool L12 2AP, UK</json:string></affiliations></json:item></author><articleId><json:string>ART34410</json:string></articleId><arkIstex>ark:/67375/WNG-1N5K3F88-R</arkIstex><language><json:string>eng</json:string></language><originalGenre><json:string>article</json:string></originalGenre><abstract>Objective: The UK Juvenile‐Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort. Methods: Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n = 198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE. Results: Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4–14.5 years). Male patients were younger than female patients (P > 0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non‐Caucasian UK patients (P > 0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1. Conclusion: The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of disease‐associated damage could be seen.</abstract><qualityIndicators><score>10</score><pdfWordCount>6793</pdfWordCount><pdfCharCount>44397</pdfCharCount><pdfVersion>1.3</pdfVersion><pdfPageCount>10</pdfPageCount><pdfPageSize>612 x 792 pts (letter)</pdfPageSize><pdfWordsPerPage>679</pdfWordsPerPage><pdfText>true</pdfText><refBibsNative>true</refBibsNative><abstractWordCount>300</abstractWordCount><abstractCharCount>2070</abstractCharCount><keywordCount>0</keywordCount></qualityIndicators><title>Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title><pmid><json:string>22294381</json:string></pmid><corporate><json:item><name>on behalf of the UK Juvenile‐Onset Systemic Lupus Erythematosus Study Group</name></json:item></corporate><genre><json:string>article</json:string></genre><host><title>Arthritis & Rheumatism</title><language><json:string>unknown</json:string></language><doi><json:string>10.1002/(ISSN)1529-0131</json:string></doi><issn><json:string>0004-3591</json:string></issn><eissn><json:string>1529-0131</json:string></eissn><publisherId><json:string>ART</json:string></publisherId><volume>64</volume><issue>7</issue><pages><first>2356</first><last>2365</last><total>10</total></pages><genre><json:string>journal</json:string></genre><subject><json:item><value>Pediatric Rheumatology</value></json:item><json:item><value>Pediatric Rheumatology</value></json:item></subject></host><namedEntities><unitex><date><json:string>2012</json:string><json:string>2006</json:string><json:string>2004</json:string></date><geogName></geogName><orgName><json:string>European Working Party on Systemic Lupus Erythematosus</json:string><json:string>Children Research Network</json:string><json:string>Club Rhumatismes et Inflammation</json:string><json:string>JSLE</json:string><json:string>UK Juvenile-Onset Systemic Lupus Erythematosus Cohort Study</json:string><json:string>Diagnostic and Therapeutic Criteria Committee of the American College of Rheumatology</json:string><json:string>Systemic Lupus International Collaborating</json:string><json:string>NHS Foundation Trust, London, UK</json:string><json:string>Musgrove Park Hospital, Taunton and Somerset</json:string><json:string>UK Juvenile-Onset Systemic Lupus Erythematosus Cohort Louise Watson</json:string><json:string>Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK</json:string><json:string>Local Research Network</json:string><json:string>National High Blood Pressure Education Program Working Group on High Blood Pressure in Children and Adolescents</json:string><json:string>Systemic Lupus International Collaborating Clinics</json:string><json:string>NHS Foundation Trust Hospital, Eaton Road, Liverpool</json:string><json:string>Trust Hospital, Manchester, UK</json:string><json:string>Birmingham Children’s Hospital NHS Foundation Trust, Birmingham, UK</json:string><json:string>Department of Women</json:string><json:string>Evelina Children’s Hospital, Guy</json:string><json:string>UK JSLE Cohort Study, the Study Group</json:string><json:string>UK Caucasian</json:string><json:string>University Hospital Coventry</json:string><json:string>UK JSLE Study Group</json:string><json:string>Institute of Translational Medicine, Alder Hey Children</json:string><json:string>Children’s Hospital, Oxford Radcliffe Hospital NHS Trust, Oxford, UK</json:string><json:string>SLICC</json:string><json:string>Nottingham Children’s Hospital and Nottingham University Hospital NHS Trust, Nottingham, UK</json:string><json:string>Comprehensive Local Research Network</json:string><json:string>UK JUVENILE SLE COHORT STUDY Systemic Lupus International Collaborating Clinics/ ACR</json:string><json:string>Damage Index UK JUVENILE SLE COHORT STUDY</json:string><json:string>ACR</json:string><json:string>UK Juvenile-Onset Systemic Lupus Erythematosus</json:string><json:string>Great Ormond Street Hospital for Children NHS Trust, London, UK</json:string><json:string>NHS Foundation Trust Hospital, Liverpool, UK</json:string><json:string>University of Liverpool</json:string><json:string>Office of National Statistics (UK)</json:string><json:string>UK National Census</json:string><json:string>UK Juvenile-Onset SLE</json:string><json:string>American College of Rheumatology</json:string><json:string>BLISS‐52 Study Group</json:string><json:string>NHS Foundation Trust, Taunton, UK</json:string><json:string>UK Clinical Research Network Study Portfolio</json:string><json:string>WATSON ET AL Clinics</json:string><json:string>Committee on Prognosis Studies in SLE</json:string><json:string>UK Juvenile-Onset Systemic Lupus Erythematosus Study Group Objective</json:string><json:string>UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</json:string><json:string>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde</json:string><json:string>American College of Rheumatology Disease Activity, Severity, and Damage</json:string><json:string>UK JSLE Cohort Study</json:string><json:string>Jenny Lind Children’s Hospital, Norfolk and Norwich University Hospital</json:string></orgName><orgName_funder></orgName_funder><orgName_provider></orgName_provider><persName><json:string>Ruth Murphy</json:string><json:string>Joyce Davidson</json:string><json:string>Natalie Fineman</json:string><json:string>Duncan Appleby</json:string><json:string>Clarissa Pilkington</json:string><json:string>Liz Reus</json:string><json:string>Gavin Cleary</json:string><json:string>Fiona Thompson</json:string><json:string>Louise Hanna</json:string><json:string>Kit Tranter</json:string><json:string>Eileen M. Baildam</json:string><json:string>Liza J. McCann</json:string><json:string>Sue Doyle</json:string><json:string>Neil Archer</json:string><json:string>Kathryn Bailey</json:string><json:string>Gill Jackson</json:string><json:string>Beverley Thomas</json:string><json:string>David Isenberg</json:string><json:string>Standardized</json:string><json:string>Anna Frost</json:string><json:string>Ann McGovern</json:string><json:string>D. Sinha</json:string><json:string>Louise Watson</json:string><json:string>Kate Armon</json:string><json:string>Of</json:string><json:string>Emma Innes</json:string><json:string>Mandy Aspinall</json:string><json:string>Valentina Leone</json:string><json:string>Janet E. McDonagh</json:string><json:string>Janet Gardner-Medwin</json:string><json:string>Jenna Shaw</json:string><json:string>Louise Spencer-Walsh</json:string><json:string>Michael W. Beresford</json:string><json:string>Caroline Gordon</json:string><json:string>Lucinda Dawson</json:string><json:string>Kjell Tullus</json:string><json:string>Jane Tizard</json:string><json:string>Ian Bruce</json:string><json:string>Beresford</json:string><json:string>Nick Wilkinson</json:string><json:string>Nicola Daly</json:string><json:string>AL Figure</json:string><json:string>London Hospitals</json:string></persName><placeName><json:string>UK</json:string><json:string>St. Thomas</json:string><json:string>Norfolk</json:string><json:string>Liverpool</json:string><json:string>Manchester</json:string><json:string>Glasgow</json:string><json:string>Coventry</json:string><json:string>Warwickshire</json:string></placeName><ref_url><json:string>http://www.liv.ac.uk/ukjsle</json:string></ref_url><ref_bibl><json:string>August 2006</json:string><json:string>Brunner et al</json:string><json:string>[21,26]</json:string></ref_bibl><bibl></bibl></unitex></namedEntities><ark><json:string>ark:/67375/WNG-1N5K3F88-R</json:string></ark><categories><wos><json:string>1 - science</json:string><json:string>2 - rheumatology</json:string></wos><scienceMetrix></scienceMetrix><scopus><json:string>1 - Health Sciences</json:string><json:string>2 - Medicine</json:string><json:string>3 - Pharmacology (medical)</json:string><json:string>1 - Life Sciences</json:string><json:string>2 - Immunology and Microbiology</json:string><json:string>3 - Immunology</json:string><json:string>1 - Health Sciences</json:string><json:string>2 - Medicine</json:string><json:string>3 - Rheumatology</json:string><json:string>1 - Health Sciences</json:string><json:string>2 - Medicine</json:string><json:string>3 - Immunology and Allergy</json:string></scopus><inist><json:string>1 - sciences appliquees, technologies et medecines</json:string><json:string>2 - sciences biologiques et medicales</json:string><json:string>3 - sciences medicales</json:string></inist></categories><publicationDate>2012</publicationDate><copyrightDate>2012</copyrightDate><doi><json:string>10.1002/art.34410</json:string></doi><id>1B4F5A3B9D3D2B27CB230AF14296F24B56D29898</id><score>1</score><fulltext><json:item><extension>pdf</extension><original>true</original><mimetype>application/pdf</mimetype><uri>https://api.istex.fr/ark:/67375/WNG-1N5K3F88-R/fulltext.pdf</uri></json:item><json:item><extension>zip</extension><original>false</original><mimetype>application/zip</mimetype><uri>https://api.istex.fr/ark:/67375/WNG-1N5K3F88-R/bundle.zip</uri></json:item><istex:fulltextTEI uri="https://api.istex.fr/ark:/67375/WNG-1N5K3F88-R/fulltext.tei"><teiHeader><fileDesc><titleStmt><title level="a" type="main">Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title><title level="a" type="short" xml:lang="en">UK Juvenile SLE Cohort Study</title></titleStmt><publicationStmt><authority>ISTEX</authority><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><availability><licence>Copyright © 2012 by the American College of Rheumatology</licence></availability><date type="published" when="2012-07"></date></publicationStmt><notesStmt><note type="content-type" subtype="article" source="article" scheme="https://content-type.data.istex.fr/ark:/67375/XTP-6N5SZHKN-D">article</note><note type="publication-type" subtype="journal" scheme="https://publication-type.data.istex.fr/ark:/67375/JMC-0GLKJH51-B">journal</note></notesStmt><sourceDesc><biblStruct type="article"><analytic><title level="a" type="main">Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title><title level="a" type="short" xml:lang="en">UK Juvenile SLE Cohort Study</title><author xml:id="author-0000"><persName><forename type="first">Louise</forename><surname>Watson</surname></persName><affiliation><orgName type="institution">University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital</orgName><address><addrLine>Liverpool</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0001"><persName><forename type="first">Valentina</forename><surname>Leone</surname></persName><affiliation><orgName type="institution">Great North Children's Hospital Foundation Trust</orgName><address><addrLine>Newcastle‐upon‐Tyne</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0002"><persName><forename type="first">Clarissa</forename><surname>Pilkington</surname></persName><affiliation><orgName type="institution">Great Ormond Street Hospital for Children NHS Trust</orgName><address><addrLine>London</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0003"><persName><forename type="first">Kjell</forename><surname>Tullus</surname></persName><affiliation><orgName type="institution">Great Ormond Street Hospital for Children NHS Trust</orgName><address><addrLine>London</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0004"><persName><forename type="first">Satyapal</forename><surname>Rangaraj</surname></persName><affiliation><orgName type="institution">Nottingham Children's Hospital and Nottingham University Hospital NHS Trust</orgName><address><addrLine>Nottingham</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0005"><persName><forename type="first">Janet E.</forename><surname>McDonagh</surname></persName><affiliation><orgName type="institution">Birmingham Children's Hospital NHS Foundation Trust</orgName><address><addrLine>Birmingham</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0006"><persName><forename type="first">Janet</forename><surname>Gardner‐Medwin</surname></persName><affiliation><orgName type="institution">Royal Hospital for Sick Children NHS Lothian University Trust</orgName><address><addrLine>Edinburgh</addrLine><addrLine>UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0007"><persName><forename type="first">Nick</forename><surname>Wilkinson</surname></persName><affiliation><orgName type="institution">The Children's Hospital</orgName><orgName type="institution">Oxford Radcliffe Hospital NHS Trust</orgName><address><addrLine>Oxford</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0008"><persName><forename type="first">Phil</forename><surname>Riley</surname></persName><affiliation><orgName type="institution">Royal Manchester Children's NHS Trust Hospital</orgName><address><addrLine>Manchester</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0009"><persName><forename type="first">Jane</forename><surname>Tizard</surname></persName><affiliation><orgName type="institution">Bristol Royal Hospital for Children</orgName><orgName type="institution">University Hospitals Bristol NHS Foundation Trust</orgName><address><addrLine>Bristol</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0010"><persName><forename type="first">Kate</forename><surname>Armon</surname></persName><affiliation><orgName type="institution">Jenny Lind Children's Hospital</orgName><orgName type="institution">Norfolk and Norwich University Hospital NHS Foundation Trust</orgName><address><addrLine>Norfolk</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0011"><persName><forename type="first">Manish D.</forename><surname>Sinha</surname></persName><affiliation><orgName type="institution">Evelina Children's Hospital</orgName><address><addrLine>Guy's and St. Thomas' NHS Foundation Trust</addrLine><addrLine>London, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0012"><persName><forename type="first">Yiannis</forename><surname>Ioannou</surname></persName><affiliation><orgName type="institution">University College London Hospitals NHS Foundation Trust</orgName><address><addrLine>London</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0013"><persName><forename type="first">Neil</forename><surname>Archer</surname></persName><affiliation><orgName type="institution">Musgrove Park Hospital</orgName><address><addrLine>Taunton and Somerset NHS Foundation Trust</addrLine><addrLine>Taunton, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0014"><persName><forename type="first">Kathryn</forename><surname>Bailey</surname></persName><affiliation><orgName type="institution">University Hospital Coventry and Warwickshire NHS Trust</orgName><address><addrLine>Coventry</addrLine><addrLine>UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0015"><persName><forename type="first">Joyce</forename><surname>Davidson</surname></persName><affiliation><orgName type="institution">Royal Hospital for Sick Children NHS Lothian University Trust</orgName><address><addrLine>Edinburgh</addrLine><addrLine>UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0016"><persName><forename type="first">Eileen M.</forename><surname>Baildam</surname></persName><affiliation><orgName type="institution">Alder Hey Children's NHS Foundation Trust Hospital</orgName><address><addrLine>Liverpool</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0017"><persName><forename type="first">Gavin</forename><surname>Cleary</surname></persName><affiliation><orgName type="institution">Alder Hey Children's NHS Foundation Trust Hospital</orgName><address><addrLine>Liverpool</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0018"><persName><forename type="first">Liza J.</forename><surname>McCann</surname></persName><affiliation><orgName type="institution">Alder Hey Children's NHS Foundation Trust Hospital</orgName><address><addrLine>Liverpool</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0019" role="corresp"><persName><forename type="first">Michael W.</forename><surname>Beresford</surname></persName><email>m.w.beresford@liverpool.ac.uk</email><affiliation><orgName type="institution">University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital</orgName><address><addrLine>Liverpool</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><author xml:id="author-0020"><author><orgName>on behalf of the UK Juvenile‐Onset Systemic Lupus Erythematosus Study Group</orgName></author><affiliation><orgName type="institution">University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital</orgName><address><addrLine>Liverpool</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Great North Children's Hospital Foundation Trust</orgName><address><addrLine>Newcastle‐upon‐Tyne</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Great Ormond Street Hospital for Children NHS Trust</orgName><address><addrLine>London</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Nottingham Children's Hospital and Nottingham University Hospital NHS Trust</orgName><address><addrLine>Nottingham</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Birmingham Children's Hospital NHS Foundation Trust</orgName><address><addrLine>Birmingham</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Royal Hospital for Sick Children NHS Lothian University Trust</orgName><address><addrLine>Edinburgh</addrLine><addrLine>UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">The Children's Hospital</orgName><orgName type="institution">Oxford Radcliffe Hospital NHS Trust</orgName><address><addrLine>Oxford</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Royal Manchester Children's NHS Trust Hospital</orgName><address><addrLine>Manchester</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Bristol Royal Hospital for Children</orgName><orgName type="institution">University Hospitals Bristol NHS Foundation Trust</orgName><address><addrLine>Bristol</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Jenny Lind Children's Hospital</orgName><orgName type="institution">Norfolk and Norwich University Hospital NHS Foundation Trust</orgName><address><addrLine>Norfolk</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Evelina Children's Hospital</orgName><address><addrLine>Guy's and St. Thomas' NHS Foundation Trust</addrLine><addrLine>London, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">University College London Hospitals NHS Foundation Trust</orgName><address><addrLine>London</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Musgrove Park Hospital</orgName><address><addrLine>Taunton and Somerset NHS Foundation Trust</addrLine><addrLine>Taunton, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">University Hospital Coventry and Warwickshire NHS Trust</orgName><address><addrLine>Coventry</addrLine><addrLine>UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address><orgName type="institution">Alder Hey Children's NHS Foundation Trust Hospital</orgName><address><addrLine>Liverpool</addrLine><addrLine>UK</addrLine><country key="GB" xml:lang="en">UNITED KINGDOM</country></address></affiliation></author><idno type="istex">1B4F5A3B9D3D2B27CB230AF14296F24B56D29898</idno><idno type="ark">ark:/67375/WNG-1N5K3F88-R</idno><idno type="DOI">10.1002/art.34410</idno><idno type="unit">ART34410</idno><idno type="toTypesetVersion">file:ART.ART34410.pdf</idno></analytic><monogr><title level="j" type="main">Arthritis & Rheumatism</title><title level="j" type="alt">ARTHRITIS AND RHEUMATISM</title><idno type="pISSN">0004-3591</idno><idno type="eISSN">1529-0131</idno><idno type="book-DOI">10.1002/(ISSN)1529-0131</idno><idno type="book-part-DOI">10.1002/art.v64.7</idno><idno type="product">ART</idno><imprint><biblScope unit="vol">64</biblScope><biblScope unit="issue">7</biblScope><biblScope unit="page" from="2356">2356</biblScope><biblScope unit="page" to="2365">2365</biblScope><biblScope unit="page-count">10</biblScope><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><date type="published" when="2012-07"></date></imprint></monogr></biblStruct></sourceDesc></fileDesc><encodingDesc><schemaRef type="ODD" url="https://xml-schema.delivery.istex.fr/tei-istex.odd"></schemaRef><appInfo><application ident="pub2tei" version="1.0.10" when="2019-12-20"><label>pub2TEI-ISTEX</label><desc>A set of style sheets for converting XML documents encoded in various scientific publisher formats into a common TEI format.
<ref target="http://www.tei-c.org/">We use TEI</ref></desc></application></appInfo></encodingDesc><profileDesc><abstract xml:lang="en" style="main"><head>Abstract</head><head>Objective</head><p>The UK Juvenile‐Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort.</p><head>Methods</head><p>Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n = 198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE.</p><head>Results</head><p>Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4–14.5 years). Male patients were younger than female patients (<hi rend="italic">P</hi> < 0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non‐Caucasian UK patients (<hi rend="italic">P</hi> < 0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1.</p><head>Conclusion</head><p>The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of disease‐associated damage could be seen.</p></abstract><textClass><keywords rend="articleCategory"><term>Pediatric Rheumatology</term></keywords><keywords rend="tocHeading1"><term>Pediatric Rheumatology</term></keywords></textClass><langUsage><language ident="en"></language></langUsage></profileDesc><revisionDesc><change when="2019-12-20" who="#istex" xml:id="pub2tei">formatting</change></revisionDesc></teiHeader></istex:fulltextTEI><json:item><extension>txt</extension><original>false</original><mimetype>text/plain</mimetype><uri>https://api.istex.fr/ark:/67375/WNG-1N5K3F88-R/fulltext.txt</uri></json:item></fulltext><metadata><istex:metadataXml wicri:clean="Wiley, elements deleted: body"><istex:xmlDeclaration>version="1.0" encoding="UTF-8" standalone="yes"</istex:xmlDeclaration><istex:document><component version="2.0" type="serialArticle" xml:lang="en"><header><publicationMeta level="product"><publisherInfo><publisherName>Wiley Subscription Services, Inc., A Wiley Company</publisherName><publisherLoc>Hoboken</publisherLoc></publisherInfo><doi registered="yes">10.1002/(ISSN)1529-0131</doi><issn type="print">0004-3591</issn><issn type="electronic">1529-0131</issn><idGroup><id type="product" value="ART"></id></idGroup><titleGroup><title type="main" xml:lang="en" sort="ARTHRITIS AND RHEUMATISM">Arthritis & Rheumatism</title><title type="short">Arthritis & Rheumatism</title></titleGroup></publicationMeta><publicationMeta level="part" position="70"><doi origin="wiley" registered="yes">10.1002/art.v64.7</doi><numberingGroup><numbering type="journalVolume" number="64">64</numbering><numbering type="journalIssue">7</numbering></numberingGroup><coverDate startDate="2012-07">July 2012</coverDate></publicationMeta><publicationMeta level="unit" type="article" position="330" status="forIssue"><doi origin="wiley" registered="yes">10.1002/art.34410</doi><idGroup><id type="unit" value="ART34410"></id></idGroup><countGroup><count type="pageTotal" number="10"></count></countGroup><titleGroup><title type="articleCategory">Pediatric Rheumatology</title><title type="tocHeading1">Pediatric Rheumatology</title></titleGroup><copyright ownership="thirdParty">Copyright © 2012 by the American College of Rheumatology</copyright><eventGroup><event type="manuscriptReceived" date="2011-08-31"></event><event type="manuscriptAccepted" date="2012-01-24"></event><event type="xmlConverted" agent="Converter:JWSART34_TO_WML3G version:3.1.5 mode:FullText" date="2012-06-27"></event><event type="publishedOnlineAccepted" date="2012-01-31"></event><event type="publishedOnlineFinalForm" date="2012-06-26"></event><event type="firstOnline" date="2012-06-26"></event><event type="xmlConverted" agent="Converter:WILEY_ML3G_TO_WILEY_ML3GV2 version:3.8.8" date="2014-01-05"></event><event type="xmlConverted" agent="Converter:WML3G_To_WML3G version:4.3.7 mode:FullText" date="2015-03-24"></event></eventGroup><numberingGroup><numbering type="pageFirst">2356</numbering><numbering type="pageLast">2365</numbering></numberingGroup><correspondenceTo>Department of Women's and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Foundation Trust Hospital, Eaton Road, Liverpool L12 2AP, UK</correspondenceTo><linkGroup><link type="toTypesetVersion" href="file:ART.ART34410.pdf"></link></linkGroup></publicationMeta><contentMeta><countGroup><count type="figureTotal" number="3"></count><count type="tableTotal" number="3"></count><count type="referenceTotal" number="48"></count><count type="wordTotal" number="7729"></count></countGroup><titleGroup><title type="main" xml:lang="en">Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title><title type="short" xml:lang="en">UK Juvenile SLE Cohort Study</title></titleGroup><creators><creator xml:id="au1" creatorRole="author" affiliationRef="#af1"><personName><givenNames>Louise</givenNames><familyName>Watson</familyName></personName></creator><creator xml:id="au2" creatorRole="author" affiliationRef="#af2"><personName><givenNames>Valentina</givenNames><familyName>Leone</familyName></personName></creator><creator xml:id="au3" creatorRole="author" affiliationRef="#af3"><personName><givenNames>Clarissa</givenNames><familyName>Pilkington</familyName></personName></creator><creator xml:id="au4" creatorRole="author" affiliationRef="#af3"><personName><givenNames>Kjell</givenNames><familyName>Tullus</familyName></personName></creator><creator xml:id="au5" creatorRole="author" affiliationRef="#af4"><personName><givenNames>Satyapal</givenNames><familyName>Rangaraj</familyName></personName></creator><creator xml:id="au6" creatorRole="author" affiliationRef="#af5"><personName><givenNames>Janet E.</givenNames><familyName>McDonagh</familyName></personName></creator><creator xml:id="au7" creatorRole="author" affiliationRef="#af6"><personName><givenNames>Janet</givenNames><familyName>Gardner‐Medwin</familyName></personName></creator><creator xml:id="au8" creatorRole="author" affiliationRef="#af7"><personName><givenNames>Nick</givenNames><familyName>Wilkinson</familyName></personName></creator><creator xml:id="au9" creatorRole="author" affiliationRef="#af8"><personName><givenNames>Phil</givenNames><familyName>Riley</familyName></personName></creator><creator xml:id="au10" creatorRole="author" affiliationRef="#af9"><personName><givenNames>Jane</givenNames><familyName>Tizard</familyName></personName></creator><creator xml:id="au11" creatorRole="author" affiliationRef="#af10"><personName><givenNames>Kate</givenNames><familyName>Armon</familyName></personName></creator><creator xml:id="au12" creatorRole="author" affiliationRef="#af11"><personName><givenNames>Manish D.</givenNames><familyName>Sinha</familyName></personName></creator><creator xml:id="au13" creatorRole="author" affiliationRef="#af12"><personName><givenNames>Yiannis</givenNames><familyName>Ioannou</familyName></personName></creator><creator xml:id="au14" creatorRole="author" affiliationRef="#af13"><personName><givenNames>Neil</givenNames><familyName>Archer</familyName></personName></creator><creator xml:id="au15" creatorRole="author" affiliationRef="#af14"><personName><givenNames>Kathryn</givenNames><familyName>Bailey</familyName></personName></creator><creator xml:id="au16" creatorRole="author" affiliationRef="#af6"><personName><givenNames>Joyce</givenNames><familyName>Davidson</familyName></personName></creator><creator xml:id="au17" creatorRole="author" affiliationRef="#af15"><personName><givenNames>Eileen M.</givenNames><familyName>Baildam</familyName></personName></creator><creator xml:id="au18" creatorRole="author" affiliationRef="#af15"><personName><givenNames>Gavin</givenNames><familyName>Cleary</familyName></personName></creator><creator xml:id="au19" creatorRole="author" affiliationRef="#af15"><personName><givenNames>Liza J.</givenNames><familyName>McCann</familyName></personName></creator><creator xml:id="au20" creatorRole="author" affiliationRef="#af1" corresponding="yes"><personName><givenNames>Michael W.</givenNames><familyName>Beresford</familyName></personName><contactDetails><email>m.w.beresford@liverpool.ac.uk</email></contactDetails></creator><creator xml:id="au21" creatorRole="author"><groupName>on behalf of the UK Juvenile‐Onset Systemic Lupus Erythematosus Study Group</groupName></creator></creators><affiliationGroup><affiliation xml:id="af1" countryCode="GB" type="organization"><unparsedAffiliation>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</unparsedAffiliation></affiliation><affiliation xml:id="af2" countryCode="GB" type="organization"><unparsedAffiliation>Great North Children's Hospital Foundation Trust, Newcastle‐upon‐Tyne, UK</unparsedAffiliation></affiliation><affiliation xml:id="af3" countryCode="GB" type="organization"><unparsedAffiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK</unparsedAffiliation></affiliation><affiliation xml:id="af4" countryCode="GB" type="organization"><unparsedAffiliation>Nottingham Children's Hospital and Nottingham University Hospital NHS Trust, Nottingham, UK</unparsedAffiliation></affiliation><affiliation xml:id="af5" countryCode="GB" type="organization"><unparsedAffiliation>Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK</unparsedAffiliation></affiliation><affiliation xml:id="af6" countryCode="GB" type="organization"><unparsedAffiliation>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</unparsedAffiliation></affiliation><affiliation xml:id="af7" countryCode="GB" type="organization"><unparsedAffiliation>The Children's Hospital, Oxford Radcliffe Hospital NHS Trust, Oxford, UK</unparsedAffiliation></affiliation><affiliation xml:id="af8" countryCode="GB" type="organization"><unparsedAffiliation>Royal Manchester Children's NHS Trust Hospital, Manchester, UK</unparsedAffiliation></affiliation><affiliation xml:id="af9" countryCode="GB" type="organization"><unparsedAffiliation>Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK</unparsedAffiliation></affiliation><affiliation xml:id="af10" countryCode="GB" type="organization"><unparsedAffiliation>Jenny Lind Children's Hospital, Norfolk and Norwich University Hospital NHS Foundation Trust, Norfolk, UK</unparsedAffiliation></affiliation><affiliation xml:id="af11" countryCode="GB" type="organization"><unparsedAffiliation>Evelina Children's Hospital, Guy's and St. Thomas' NHS Foundation Trust, London, UK</unparsedAffiliation></affiliation><affiliation xml:id="af12" countryCode="GB" type="organization"><unparsedAffiliation>University College London Hospitals NHS Foundation Trust, London, UK</unparsedAffiliation></affiliation><affiliation xml:id="af13" countryCode="GB" type="organization"><unparsedAffiliation>Musgrove Park Hospital, Taunton and Somerset NHS Foundation Trust, Taunton, UK</unparsedAffiliation></affiliation><affiliation xml:id="af14" countryCode="GB" type="organization"><unparsedAffiliation>University Hospital Coventry and Warwickshire NHS Trust, Coventry, UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</unparsedAffiliation></affiliation><affiliation xml:id="af15" countryCode="GB" type="organization"><unparsedAffiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</unparsedAffiliation></affiliation></affiliationGroup><fundingInfo><fundingAgency>Newcastle‐upon‐Tyne</fundingAgency></fundingInfo><fundingInfo><fundingAgency>Alder Hey Kidney Fund</fundingAgency></fundingInfo><fundingInfo><fundingAgency>Lupus UK</fundingAgency></fundingInfo><abstractGroup><abstract type="main" xml:lang="en"><title type="main">Abstract</title><section xml:id="abs1-1"><title type="main">Objective</title><p>The UK Juvenile‐Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort.</p></section><section xml:id="abs1-2"><title type="main">Methods</title><p>Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n = 198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE.</p></section><section xml:id="abs1-3"><title type="main">Results</title><p>Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4–14.5 years). Male patients were younger than female patients (<i>P</i> < 0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non‐Caucasian UK patients (<i>P</i> < 0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1.</p></section><section xml:id="abs1-4"><title type="main">Conclusion</title><p>The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of disease‐associated damage could be seen.</p></section></abstract></abstractGroup></contentMeta></header></component></istex:document></istex:metadataXml><mods version="3.6"><titleInfo lang="en"><title>Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title></titleInfo><titleInfo type="abbreviated" lang="en"><title>UK Juvenile SLE Cohort Study</title></titleInfo><titleInfo type="alternative" contentType="CDATA" lang="en"><title>Disease activity, severity, and damage in the UK juvenile‐onset systemic lupus erythematosus cohort</title></titleInfo><name type="personal"><namePart type="given">Louise</namePart><namePart type="family">Watson</namePart><affiliation>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Valentina</namePart><namePart type="family">Leone</namePart><affiliation>Great North Children's Hospital Foundation Trust, Newcastle‐upon‐Tyne, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Clarissa</namePart><namePart type="family">Pilkington</namePart><affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Kjell</namePart><namePart type="family">Tullus</namePart><affiliation>Great Ormond Street Hospital for Children NHS Trust, London, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Satyapal</namePart><namePart type="family">Rangaraj</namePart><affiliation>Nottingham Children's Hospital and Nottingham University Hospital NHS Trust, Nottingham, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Janet E.</namePart><namePart type="family">McDonagh</namePart><affiliation>Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Janet</namePart><namePart type="family">Gardner‐Medwin</namePart><affiliation>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Nick</namePart><namePart type="family">Wilkinson</namePart><affiliation>The Children's Hospital, Oxford Radcliffe Hospital NHS Trust, Oxford, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Phil</namePart><namePart type="family">Riley</namePart><affiliation>Royal Manchester Children's NHS Trust Hospital, Manchester, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Jane</namePart><namePart type="family">Tizard</namePart><affiliation>Bristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Kate</namePart><namePart type="family">Armon</namePart><affiliation>Jenny Lind Children's Hospital, Norfolk and Norwich University Hospital NHS Foundation Trust, Norfolk, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Manish D.</namePart><namePart type="family">Sinha</namePart><affiliation>Evelina Children's Hospital, Guy's and St. Thomas' NHS Foundation Trust, London, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Yiannis</namePart><namePart type="family">Ioannou</namePart><affiliation>University College London Hospitals NHS Foundation Trust, London, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Neil</namePart><namePart type="family">Archer</namePart><affiliation>Musgrove Park Hospital, Taunton and Somerset NHS Foundation Trust, Taunton, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Kathryn</namePart><namePart type="family">Bailey</namePart><affiliation>University Hospital Coventry and Warwickshire NHS Trust, Coventry, UK, and George Eliot Hospital NHS Trust, Nuneaton, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Joyce</namePart><namePart type="family">Davidson</namePart><affiliation>Royal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Eileen M.</namePart><namePart type="family">Baildam</namePart><affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Gavin</namePart><namePart type="family">Cleary</namePart><affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Liza J.</namePart><namePart type="family">McCann</namePart><affiliation>Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Michael W.</namePart><namePart type="family">Beresford</namePart><affiliation>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</affiliation><affiliation>E-mail: m.w.beresford@liverpool.ac.uk</affiliation><affiliation>Correspondence address: Department of Women's and Children's Health, Institute of Translational Medicine, Alder Hey Children's NHS Foundation Trust Hospital, Eaton Road, Liverpool L12 2AP, UK</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="corporate"><namePart>on behalf of the UK Juvenile‐Onset Systemic Lupus Erythematosus Study Group</namePart><description>University of Liverpool and Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UKGreat North Children's Hospital Foundation Trust, Newcastle‐upon‐Tyne, UKGreat Ormond Street Hospital for Children NHS Trust, London, UKNottingham Children's Hospital and Nottingham University Hospital NHS Trust, Nottingham, UKBirmingham Children's Hospital NHS Foundation Trust, Birmingham, UKRoyal Hospital for Sick Children NHS Lothian University Trust, Edinburgh, UK, and Royal Hospital for Sick Children NHS Greater Glasgow and Clyde, Glasgow, UKThe Children's Hospital, Oxford Radcliffe Hospital NHS Trust, Oxford, UKRoyal Manchester Children's NHS Trust Hospital, Manchester, UKBristol Royal Hospital for Children, University Hospitals Bristol NHS Foundation Trust, Bristol, UKJenny Lind Children's Hospital, Norfolk and Norwich University Hospital NHS Foundation Trust, Norfolk, UKEvelina Children's Hospital, Guy's and St. Thomas' NHS Foundation Trust, London, UKUniversity College London Hospitals NHS Foundation Trust, London, UKMusgrove Park Hospital, Taunton and Somerset NHS Foundation Trust, Taunton, UKUniversity Hospital Coventry and Warwickshire NHS Trust, Coventry, UK, and George Eliot Hospital NHS Trust, Nuneaton, UKAlder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK</description></name><typeOfResource>text</typeOfResource><genre type="article" displayLabel="article" authority="ISTEX" authorityURI="https://content-type.data.istex.fr" valueURI="https://content-type.data.istex.fr/ark:/67375/XTP-6N5SZHKN-D">article</genre><originInfo><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><place><placeTerm type="text">Hoboken</placeTerm></place><dateIssued encoding="w3cdtf">2012-07</dateIssued><dateCaptured encoding="w3cdtf">2011-08-31</dateCaptured><dateValid encoding="w3cdtf">2012-01-24</dateValid><copyrightDate encoding="w3cdtf">2012</copyrightDate></originInfo><language><languageTerm type="code" authority="rfc3066">en</languageTerm><languageTerm type="code" authority="iso639-2b">eng</languageTerm></language><physicalDescription><extent unit="figures">3</extent><extent unit="tables">3</extent><extent unit="references">48</extent><extent unit="words">7729</extent></physicalDescription><abstract lang="en">Objective: The UK Juvenile‐Onset Systemic Lupus Erythematosus (JSLE) Cohort Study is a multicenter collaborative network established with the aim of improving the understanding of juvenile SLE. The present study was undertaken to describe the clinical manifestations and disease course in patients with juvenile SLE from this large, national inception cohort. Methods: Detailed data on clinical phenotype were collected at baseline and at regular clinic reviews and annual followup assessments in 232 patients from 14 centers across the UK over 4.5 years. Patients with SLE were identified according to the American College of Rheumatology (ACR) SLE classification criteria. The present cohort comprised children with juvenile SLE (n = 198) whose diagnosis fulfilled ≥4 of the ACR criteria for SLE. Results: Among patients with juvenile SLE, the female:male sex distribution was 5.6:1 and the median age at diagnosis was 12.6 years (interquartile range 10.4–14.5 years). Male patients were younger than female patients (P < 0.01). Standardized ethnicity data demonstrated a greater risk of juvenile SLE in non‐Caucasian UK patients (P < 0.05). Scores on the pediatric adaptation of the 2004 British Isles Lupus Assessment Group disease activity index demonstrated significantly increased frequencies of musculoskeletal (82%), renal (80%), hematologic (91%), immunologic (54%), and neurologic (26%) involvement among the patients over time. A large proportion of the patients (93%) were taking steroids and 24% of the patients required treatment with cyclophosphamide. Disease damage was common, with 28% of the patients having a Systemic Lupus International Collaborating Clinics/ACR damage score of ≥1. Conclusion: The data on these patients from the UK JSLE Cohort Study, comprising one of the largest national inception cohorts of patients with juvenile SLE to date, indicate that severe organ involvement and significant disease activity are primary characteristics in children with juvenile SLE. In addition, accumulation of disease‐associated damage could be seen.</abstract><note type="funding">Newcastle‐upon‐Tyne</note><note type="funding">Alder Hey Kidney Fund</note><note type="funding">Lupus UK</note><relatedItem type="host"><titleInfo><title>Arthritis & Rheumatism</title></titleInfo><titleInfo type="abbreviated"><title>Arthritis & Rheumatism</title></titleInfo><genre type="journal" authority="ISTEX" authorityURI="https://publication-type.data.istex.fr" valueURI="https://publication-type.data.istex.fr/ark:/67375/JMC-0GLKJH51-B">journal</genre><subject><genre>article-category</genre><topic>Pediatric Rheumatology</topic><topic>Pediatric Rheumatology</topic></subject><identifier type="ISSN">0004-3591</identifier><identifier type="eISSN">1529-0131</identifier><identifier type="DOI">10.1002/(ISSN)1529-0131</identifier><identifier type="PublisherID">ART</identifier><part><date>2012</date><detail type="volume"><caption>vol.</caption><number>64</number></detail><detail type="issue"><caption>no.</caption><number>7</number></detail><extent unit="pages"><start>2356</start><end>2365</end><total>10</total></extent></part></relatedItem><relatedItem type="references" displayLabel="cit1"><titleInfo><title>Adolescent onset of lupus results in more aggressive disease and worse outcomes: results of a nested matched case‐control study within LUMINA, a multiethnic US cohort (LUMINA LVII)</title></titleInfo><name type="personal"><namePart type="given">LB</namePart><namePart type="family">Tucker</namePart><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">AG</namePart><namePart type="family">Uribe</namePart><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">M</namePart><namePart type="family">Fernandez</namePart><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">LM</namePart><namePart type="family">Vila</namePart><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">G</namePart><namePart type="family">McGwin</namePart><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">M</namePart><namePart type="family">Apte</namePart><role><roleTerm type="text">author</roleTerm></role></name><genre>journal-article</genre><note type="citation/reference">Tucker LB, Uribe AG, Fernandez M, Vila LM, McGwin G, Apte M, et al. 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