Clinical Characteristics of Children With Juvenile Dermatomyositis: The Childhood Arthritis and Rheumatology Research Alliance Registry

Objective To investigate aspects of juvenile dermatomyositis (DM), including disease characteristics and treatment, through a national multicenter registry. Methods Subjects meeting the modified Bohan and Peter criteria for definite juvenile DM were analyzed from the cross‐sectional Childhood Arthri...

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Veröffentlicht in:Arthritis care & research (2010) 2014-03, Vol.66 (3), p.404-410
Hauptverfasser: Robinson, Angela Byun, Hoeltzel, Mark F., Wahezi, Dawn M., Becker, Mara L., Kessler, Elizabeth A., Schmeling, Heinrike, Carrasco, Ruy, Huber, Adam M., Feldman, Brian M., Reed, Ann M.
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container_issue 3
container_start_page 404
container_title Arthritis care & research (2010)
container_volume 66
creator Robinson, Angela Byun
Hoeltzel, Mark F.
Wahezi, Dawn M.
Becker, Mara L.
Kessler, Elizabeth A.
Schmeling, Heinrike
Carrasco, Ruy
Huber, Adam M.
Feldman, Brian M.
Reed, Ann M.
description Objective To investigate aspects of juvenile dermatomyositis (DM), including disease characteristics and treatment, through a national multicenter registry. Methods Subjects meeting the modified Bohan and Peter criteria for definite juvenile DM were analyzed from the cross‐sectional Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry between 2010 and 2012 from 55 US pediatric rheumatology centers. Demographics, disease characteristics, diagnostic assessments, and medication exposure data were collected at enrollment. Results A total of 384 subjects met the criteria for analysis. At enrollment, the median Childhood Myositis Assessment Scale score was 51 (interquartile range [IQR] 46–52), the median Childhood Health Assessment Questionnaire score was 0 (IQR 0–0.5), and the median physician and subject global assessment scores were 1 (IQR 0–2) and 1 (IQR 0–3), respectively, out of a maximum of 10. Of the diagnostic assessments, magnetic resonance imaging was more likely than electromyography or muscle biopsy to show abnormalities. A total of 329 subjects had ≥2 diagnostic studies performed, and >34% of these subjects reported ≥1 negative study. Ninety‐five percent had been treated with corticosteroids and 92% with methotrexate, suggesting that these medications were almost universally prescribed for juvenile DM in the US. Conclusion In 2 years, the ongoing CARRA Registry has collected clinical data on 384 children with juvenile DM and has the potential to become one of the largest juvenile DM cohorts in the world. More research is needed about prognostic factors in juvenile DM, and differences in therapy based on manifestations of disease need to be explored by practitioners. This registry provides the infrastructure needed to advance clinical and translational research and represents a major step toward improving outcomes of children with juvenile DM.
doi_str_mv 10.1002/acr.22142
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Methods Subjects meeting the modified Bohan and Peter criteria for definite juvenile DM were analyzed from the cross‐sectional Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry between 2010 and 2012 from 55 US pediatric rheumatology centers. Demographics, disease characteristics, diagnostic assessments, and medication exposure data were collected at enrollment. Results A total of 384 subjects met the criteria for analysis. At enrollment, the median Childhood Myositis Assessment Scale score was 51 (interquartile range [IQR] 46–52), the median Childhood Health Assessment Questionnaire score was 0 (IQR 0–0.5), and the median physician and subject global assessment scores were 1 (IQR 0–2) and 1 (IQR 0–3), respectively, out of a maximum of 10. Of the diagnostic assessments, magnetic resonance imaging was more likely than electromyography or muscle biopsy to show abnormalities. A total of 329 subjects had ≥2 diagnostic studies performed, and &gt;34% of these subjects reported ≥1 negative study. Ninety‐five percent had been treated with corticosteroids and 92% with methotrexate, suggesting that these medications were almost universally prescribed for juvenile DM in the US. Conclusion In 2 years, the ongoing CARRA Registry has collected clinical data on 384 children with juvenile DM and has the potential to become one of the largest juvenile DM cohorts in the world. More research is needed about prognostic factors in juvenile DM, and differences in therapy based on manifestations of disease need to be explored by practitioners. This registry provides the infrastructure needed to advance clinical and translational research and represents a major step toward improving outcomes of children with juvenile DM.</description><identifier>ISSN: 2151-464X</identifier><identifier>EISSN: 2151-4658</identifier><identifier>DOI: 10.1002/acr.22142</identifier><identifier>PMID: 23983017</identifier><language>eng</language><publisher>United States</publisher><subject>Adolescent ; Child ; Cross-Sectional Studies ; Dermatomyositis - diagnosis ; Dermatomyositis - drug therapy ; Dermatomyositis - epidemiology ; Female ; Humans ; Male ; Registries ; Rheumatology - organization &amp; administration</subject><ispartof>Arthritis care &amp; research (2010), 2014-03, Vol.66 (3), p.404-410</ispartof><rights>Copyright © 2014 by the American College of Rheumatology</rights><rights>Copyright © 2014 by the American College of Rheumatology.</rights><rights>2014, American College of Rheumatology 2014</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4152-f8afbb441472ed513dd48b7665ce2314df27e0b0ca0adf5a638443c1d645ac6f3</citedby><cites>FETCH-LOGICAL-c4152-f8afbb441472ed513dd48b7665ce2314df27e0b0ca0adf5a638443c1d645ac6f3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Facr.22142$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Facr.22142$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>230,314,776,780,881,1411,27903,27904,45553,45554</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/23983017$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Robinson, Angela Byun</creatorcontrib><creatorcontrib>Hoeltzel, Mark F.</creatorcontrib><creatorcontrib>Wahezi, Dawn M.</creatorcontrib><creatorcontrib>Becker, Mara L.</creatorcontrib><creatorcontrib>Kessler, Elizabeth A.</creatorcontrib><creatorcontrib>Schmeling, Heinrike</creatorcontrib><creatorcontrib>Carrasco, Ruy</creatorcontrib><creatorcontrib>Huber, Adam M.</creatorcontrib><creatorcontrib>Feldman, Brian M.</creatorcontrib><creatorcontrib>Reed, Ann M.</creatorcontrib><creatorcontrib>Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators</creatorcontrib><creatorcontrib>the Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators</creatorcontrib><title>Clinical Characteristics of Children With Juvenile Dermatomyositis: The Childhood Arthritis and Rheumatology Research Alliance Registry</title><title>Arthritis care &amp; research (2010)</title><addtitle>Arthritis Care Res (Hoboken)</addtitle><description>Objective To investigate aspects of juvenile dermatomyositis (DM), including disease characteristics and treatment, through a national multicenter registry. Methods Subjects meeting the modified Bohan and Peter criteria for definite juvenile DM were analyzed from the cross‐sectional Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry between 2010 and 2012 from 55 US pediatric rheumatology centers. Demographics, disease characteristics, diagnostic assessments, and medication exposure data were collected at enrollment. Results A total of 384 subjects met the criteria for analysis. At enrollment, the median Childhood Myositis Assessment Scale score was 51 (interquartile range [IQR] 46–52), the median Childhood Health Assessment Questionnaire score was 0 (IQR 0–0.5), and the median physician and subject global assessment scores were 1 (IQR 0–2) and 1 (IQR 0–3), respectively, out of a maximum of 10. Of the diagnostic assessments, magnetic resonance imaging was more likely than electromyography or muscle biopsy to show abnormalities. A total of 329 subjects had ≥2 diagnostic studies performed, and &gt;34% of these subjects reported ≥1 negative study. Ninety‐five percent had been treated with corticosteroids and 92% with methotrexate, suggesting that these medications were almost universally prescribed for juvenile DM in the US. Conclusion In 2 years, the ongoing CARRA Registry has collected clinical data on 384 children with juvenile DM and has the potential to become one of the largest juvenile DM cohorts in the world. More research is needed about prognostic factors in juvenile DM, and differences in therapy based on manifestations of disease need to be explored by practitioners. This registry provides the infrastructure needed to advance clinical and translational research and represents a major step toward improving outcomes of children with juvenile DM.</description><subject>Adolescent</subject><subject>Child</subject><subject>Cross-Sectional Studies</subject><subject>Dermatomyositis - diagnosis</subject><subject>Dermatomyositis - drug therapy</subject><subject>Dermatomyositis - epidemiology</subject><subject>Female</subject><subject>Humans</subject><subject>Male</subject><subject>Registries</subject><subject>Rheumatology - organization &amp; administration</subject><issn>2151-464X</issn><issn>2151-4658</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp1kU1v1DAQhi0EolXpgT-AfITDtv5MXA5Iq_CtSkirIrhZjj3ZGDlxsZOi_AL-Nl5SVnDAl7FmHj0z0ovQU0ouKCHs0th0wRgV7AE6ZVTSjaikenj8i68n6Dznb6Q8zpTiV4_RCeNXihNan6KfTfCjtybgpjfJ2AmSz5O3GceutHxwCUb8xU89_jjfwegD4NeQBjPFYYnZTz6_xDc9rGwfo8PbNPXpMMBmdHjXw3ygQ9wveAcZTLI93obgzWihdPZlX1qeoEedCRnO7-sZ-vz2zU3zfnP96d2HZnu9sYJKtumU6dpWCCpqBk5S7pxQbV1V0gLjVLiO1UBaYg0xrpOm4koIbqmrhDS26vgZerV6b-d2AGdhnJIJ-jb5waRFR-P1v5PR93of77QgtaqkKILn94IUv8-QJz34bCEEM0Kcs6aSCCElUbygL1bUpphzgu64hhJ9yE6X7PTv7Ar77O-7juSfpApwuQI_SgTL_0162-xW5S-JfKby</recordid><startdate>201403</startdate><enddate>201403</enddate><creator>Robinson, Angela Byun</creator><creator>Hoeltzel, Mark F.</creator><creator>Wahezi, Dawn M.</creator><creator>Becker, Mara L.</creator><creator>Kessler, Elizabeth A.</creator><creator>Schmeling, Heinrike</creator><creator>Carrasco, Ruy</creator><creator>Huber, Adam M.</creator><creator>Feldman, Brian M.</creator><creator>Reed, Ann M.</creator><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>201403</creationdate><title>Clinical Characteristics of Children With Juvenile Dermatomyositis: The Childhood Arthritis and Rheumatology Research Alliance Registry</title><author>Robinson, Angela Byun ; Hoeltzel, Mark F. ; Wahezi, Dawn M. ; Becker, Mara L. ; Kessler, Elizabeth A. ; Schmeling, Heinrike ; Carrasco, Ruy ; Huber, Adam M. ; Feldman, Brian M. ; Reed, Ann M.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4152-f8afbb441472ed513dd48b7665ce2314df27e0b0ca0adf5a638443c1d645ac6f3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Adolescent</topic><topic>Child</topic><topic>Cross-Sectional Studies</topic><topic>Dermatomyositis - diagnosis</topic><topic>Dermatomyositis - drug therapy</topic><topic>Dermatomyositis - epidemiology</topic><topic>Female</topic><topic>Humans</topic><topic>Male</topic><topic>Registries</topic><topic>Rheumatology - organization &amp; administration</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Robinson, Angela Byun</creatorcontrib><creatorcontrib>Hoeltzel, Mark F.</creatorcontrib><creatorcontrib>Wahezi, Dawn M.</creatorcontrib><creatorcontrib>Becker, Mara L.</creatorcontrib><creatorcontrib>Kessler, Elizabeth A.</creatorcontrib><creatorcontrib>Schmeling, Heinrike</creatorcontrib><creatorcontrib>Carrasco, Ruy</creatorcontrib><creatorcontrib>Huber, Adam M.</creatorcontrib><creatorcontrib>Feldman, Brian M.</creatorcontrib><creatorcontrib>Reed, Ann M.</creatorcontrib><creatorcontrib>Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators</creatorcontrib><creatorcontrib>the Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Arthritis care &amp; research (2010)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Robinson, Angela Byun</au><au>Hoeltzel, Mark F.</au><au>Wahezi, Dawn M.</au><au>Becker, Mara L.</au><au>Kessler, Elizabeth A.</au><au>Schmeling, Heinrike</au><au>Carrasco, Ruy</au><au>Huber, Adam M.</au><au>Feldman, Brian M.</au><au>Reed, Ann M.</au><aucorp>Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators</aucorp><aucorp>the Juvenile Myositis CARRA Subgroup, for the CARRA Registry Investigators</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Clinical Characteristics of Children With Juvenile Dermatomyositis: The Childhood Arthritis and Rheumatology Research Alliance Registry</atitle><jtitle>Arthritis care &amp; research (2010)</jtitle><addtitle>Arthritis Care Res (Hoboken)</addtitle><date>2014-03</date><risdate>2014</risdate><volume>66</volume><issue>3</issue><spage>404</spage><epage>410</epage><pages>404-410</pages><issn>2151-464X</issn><eissn>2151-4658</eissn><abstract>Objective To investigate aspects of juvenile dermatomyositis (DM), including disease characteristics and treatment, through a national multicenter registry. Methods Subjects meeting the modified Bohan and Peter criteria for definite juvenile DM were analyzed from the cross‐sectional Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry between 2010 and 2012 from 55 US pediatric rheumatology centers. Demographics, disease characteristics, diagnostic assessments, and medication exposure data were collected at enrollment. Results A total of 384 subjects met the criteria for analysis. At enrollment, the median Childhood Myositis Assessment Scale score was 51 (interquartile range [IQR] 46–52), the median Childhood Health Assessment Questionnaire score was 0 (IQR 0–0.5), and the median physician and subject global assessment scores were 1 (IQR 0–2) and 1 (IQR 0–3), respectively, out of a maximum of 10. Of the diagnostic assessments, magnetic resonance imaging was more likely than electromyography or muscle biopsy to show abnormalities. A total of 329 subjects had ≥2 diagnostic studies performed, and &gt;34% of these subjects reported ≥1 negative study. Ninety‐five percent had been treated with corticosteroids and 92% with methotrexate, suggesting that these medications were almost universally prescribed for juvenile DM in the US. Conclusion In 2 years, the ongoing CARRA Registry has collected clinical data on 384 children with juvenile DM and has the potential to become one of the largest juvenile DM cohorts in the world. More research is needed about prognostic factors in juvenile DM, and differences in therapy based on manifestations of disease need to be explored by practitioners. This registry provides the infrastructure needed to advance clinical and translational research and represents a major step toward improving outcomes of children with juvenile DM.</abstract><cop>United States</cop><pmid>23983017</pmid><doi>10.1002/acr.22142</doi><tpages>7</tpages><oa>free_for_read</oa></addata></record>
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subjects Adolescent
Child
Cross-Sectional Studies
Dermatomyositis - diagnosis
Dermatomyositis - drug therapy
Dermatomyositis - epidemiology
Female
Humans
Male
Registries
Rheumatology - organization & administration
title Clinical Characteristics of Children With Juvenile Dermatomyositis: The Childhood Arthritis and Rheumatology Research Alliance Registry
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