Long-term outcome in patients with juvenile dermatomyositis: a cross-sectional follow-up study

Mathiesen, Per Møller; Hegaard, Hanne Kristine; Herlin, Troels; Žák, Marek; Pedersen, Frants; Nielsen, Susan

doi:10.3109/03009742.2011.608376

Cited by 80 publications

(74 citation statements)

References 25 publications

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“…Higher initial levels of serum creatine kinase and prolonged elevation of muscle enzymes have been associated with calcinosis as well [5,35]. An association with lipodystrophy and panniculitis may be seen due to the fact these complications are also associated with severe and prolonged disease [8,9,36]. A large international multicenter study found that calcinosis in JDM is associated with earlier year of onset, older age at onset, chronic polycyclic or chronic continuous illness course, and increased disease duration [8].…”

Section: Risk Factors For Calcinosismentioning

confidence: 99%

“…A large international multicenter study found that calcinosis in JDM is associated with earlier year of onset, older age at onset, chronic polycyclic or chronic continuous illness course, and increased disease duration [8]. Analysis of a Danish cohort, including long-term follow-up, confirmed disease duration greater than 4 years to be a risk factor for calcinosis [9]. Another multicenter registry has described an association of calcinosis with African American race, even after adjustment for duration of disease and time to rheumatologic care [37].…”

Section: Risk Factors For Calcinosismentioning

confidence: 99%

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The Presentation, Assessment, Pathogenesis, and Treatment of Calcinosis in Juvenile Dermatomyositis

et al. 2014

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Calcinosis is one of the hallmark sequelae of juvenile dermatomyositis (JDM), and despite recent progress in the therapy of JDM, dystrophic calcification still occurs in approximately one-third of patients. This review discusses our current, albeit limited, understanding of risk factors for the development of calcinosis in JDM, as well as approaches to assessment, and current views on its pathogenesis. Anecdotal approaches to treating calcinosis associated with JDM, including both anti-inflammatory therapies and agents aimed at inhibiting the deposition of calcium hydroxyapatite, are reviewed. An improved understanding of the pathogenesis of calcinosis, the establishment of standardized measurement tools to assess calcinosis, and randomized controlled trials employing more sensitive outcome measures are needed to develop efficacious therapies for this often disabling complication.

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Section: Risk Factors For Calcinosismentioning

confidence: 99%

Section: Risk Factors For Calcinosismentioning

confidence: 99%

The Presentation, Assessment, Pathogenesis, and Treatment of Calcinosis in Juvenile Dermatomyositis

et al. 2014

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“…Registries of larger size are required to determine the relevance of these factors in predicting disease course. Furthermore, calcinosis, lipodystrophy and cutaneous ulcerations are not typically present at onset or diagnosis, as analysed in this study, but have been found in some cohorts to be associated with a chronic illness course or longstanding active disease in patients with JIIM (5,25). …”

Section: Discussionmentioning

confidence: 64%

Brief Report: Association of Myositis Autoantibodies, Clinical Features, and Environmental Exposures at Illness Onset With Disease Course in Juvenile Myositis

Habers

Huber

Mamyrova

et al. 2016

Arthritis & Rheumatology

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Objective To identify early factors associated with disease course in patients with juvenile idiopathic inflammatory myopathies (JIIM). Methods Univariable and multivariable multinomial logistic regression analyses were performed in a large JIIM registry (n=365), including demographics, early clinical features, serum muscle enzyme levels, myositis autoantibodies, environmental exposures, and immunogenetic polymorphisms. Results Multivariable associations with chronic or polycyclic courses compared to monocyclic included myositis-specific autoantibodies (multinomial odds ratio (M-OR) 4.2 and 2.8, respectively), myositis-associated autoantibodies (M-OR 4.8 and 3.5), and a documented infection within six months of illness onset (M-OR 2.5 and 4.7). A higher overall clinical symptom score at diagnosis was associated with chronic or monocyclic courses compared to polycyclic. Furthermore, a severe illness onset was associated with chronic compared to monocyclic or polycyclic courses (M-OR 2.1 and 2.6), while anti-p155/140 autoantibodies were associated with chronic or polycyclic courses compared to monocyclic (M-OR 3.9 and 2.3). Additional univariable associations of chronic compared to monocyclic course included photosensitivity, “V-sign” or “Shawl-sign” rashes, and cuticular overgrowth (OR 2.2–3.2). The mean and highest ultraviolet index in the month before diagnosis were associated with a chronic compared to polycyclic course in boys (OR 1.3 and 1.5), while residing in the Northwest was less frequently associated with a chronic course (OR 0.2). Conclusion Myositis autoantibodies, in particular anti-p155/140, and a number of early clinical features and environmental exposures were associated with a chronic course in patients with JIIM. These findings suggest early factors can be identified that are associated with poorer outcomes in JIIM.

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“…We have categorized this listing of myositis research registries into different groups (see Tables 1, 2, and 3) [13**,14,15*,16–28,29*,30*,31–37,38*,39–42,43* 44,45,46*,47–60,61**,62,63*,64*,65, 66*,67,68**,69*,70*,71,72*,73–82,83*,84–90,91*,92–107,108*,109,110**,111** 112–115,116*,117, 118*,119–121, 122**,123–129, 130*,131–133,134*,135,136*, 137–149,150*,151,152,153*,154*] based on the types of myositis included, as well as whether the registries are regional, national, or international in scope. Thirteen registries are international and 33 are national or regional registries.…”

Section: Myositis Registries and Biorepositoriesmentioning

confidence: 99%

“…Tools such as the Myositis Damage Index have enabled further understanding of long-term outcomes and the appreciation that most adult and juvenile myositis patients have moderate to severe damage on long-term follow-up as well as ongoing active disease [81,148;,149,151, 152,159,160]. Interest in long-term outcomes and prognosis has also received attention more generally, including the recognition of risk factors for chronic illness course in JDM [35,104], associated malignancies or autoimmune overlap syndromes [36,37,66*], or certain sequelae of disease, such as calcinosis, lipodystrophy [100,104,113], premature cardiovascular disease, and metabolic syndrome [38*,69*,147].…”

Section: Research Advances Through Myositis Registries and Biorepositmentioning

confidence: 99%

Myositis registries and biorepositories

Rider¹,

Dankó²,

Miller³

2014

Current Opinion in Rheumatology

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Purpose of review Clinical registries and biorepositories have proven extremely useful in many studies of diseases, especially rare diseases. Given their rarity and diversity, the idiopathic inflammatory myopathies, or myositis syndromes, have benefited from individual researchers’ collections of cohorts of patients. Major efforts are being made to establish large registries and biorepositories that will allow many additional studies to be performed that were not possible before. Here we describe the registries developed by investigators and patient support groups that are currently available for collaborative research purposes. Recent findings We have identified 46 myositis research registries, including many with biorepositories, which have been developed for a wide variety of purposes and have resulted in great advances in understanding the range of phenotypes, clinical presentations, risk factors, pathogenic mechanisms, outcome assessment, therapeutic responses, and prognoses. These are now available for collaborative use to undertake additional studies. Two myositis patient registries have been developed for research, and myositis patient support groups maintain demographic registries with large numbers of patients available to be contacted for potential research participation. Summary Investigator-initiated myositis research registries and biorepositories have proven extremely useful in understanding many aspects of these rare and diverse autoimmune diseases. These registries and biorepositories, in addition to those developed by myositis patient support groups, deserve continued support to maintain the momentum in this field as they offer major opportunities to improve understanding of the pathogenesis and treatment of these diseases in cost-effective ways.

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Long-term outcome in patients with juvenile dermatomyositis: a cross-sectional follow-up study

Cited by 80 publications

References 25 publications

The Presentation, Assessment, Pathogenesis, and Treatment of Calcinosis in Juvenile Dermatomyositis

The Presentation, Assessment, Pathogenesis, and Treatment of Calcinosis in Juvenile Dermatomyositis

Brief Report: Association of Myositis Autoantibodies, Clinical Features, and Environmental Exposures at Illness Onset With Disease Course in Juvenile Myositis

Myositis registries and biorepositories

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