scholarly journals Differences sustained between diffuse and limited forms of juvenile systemic sclerosis in expanded international cohort. www.juvenile‐scleroderma.com

2021 ◽  
Author(s):  
Ivan Foeldvari ◽  
Jens Klotsche ◽  
Ozgur Kasapcopur ◽  
Amra Adrovic ◽  
Maria Teresa Terreri ◽  
...  
2014 ◽  
Vol 12 (S1) ◽  
Author(s):  
Sandra I Sousa ◽  
Susana Fernandes ◽  
Paula Estanqueiro ◽  
Carla Zilhão ◽  
Catarina Resende ◽  
...  

2013 ◽  
Vol 149 (1) ◽  
pp. 146-155 ◽  
Author(s):  
Andreas Reiff ◽  
Kenneth I. Weinberg ◽  
Timothy Triche ◽  
Bernadette Masinsin ◽  
Kris M. Mahadeo ◽  
...  

2011 ◽  
Vol 32 (7) ◽  
pp. 1040-1042 ◽  
Author(s):  
Masaki Shimizu ◽  
Yoko Hashida ◽  
Kazuyuki Ueno ◽  
Tadafumi Yokoyama ◽  
Yuko Nakayama ◽  
...  

2005 ◽  
Vol 1051 (1) ◽  
pp. 229-234 ◽  
Author(s):  
SZILVIA SZAMOSI ◽  
LÁSZLÓ MARÓDI ◽  
LÁSZLÓ CZIRJÁK ◽  
ZOLTÁN ELLENES ◽  
GABRIELLA SZÜCS

2018 ◽  
Vol 4 (1) ◽  
pp. 17-27 ◽  
Author(s):  
Murray Baron ◽  
Bashar Kahaleh ◽  
Elana J Bernstein ◽  
Lorinda Chung ◽  
Philip J Clements ◽  
...  

The Scleroderma Clinical Trials Consortium represents many of the clinical researchers in the world who are interested in improving the efficiency of clinical trials in systemic sclerosis. The Scleroderma Clinical Trials Consortium has established 11 working groups to develop and validate better ways of measuring and recording multiple aspects of this heterogeneous disease. These include groups working on arthritis, disease damage, disease activity, cardiac disease, juvenile systemic sclerosis, the gastrointestinal tract, vascular component, calcinosis, scleroderma renal crisis, interstitial lung disease, and skin measurement. Members of the Scleroderma Clinical Trials Consortium may join any one or more of these groups. Some of the working groups have only recently started their work, some are nearing completion of their mandated tasks, and others are in the midst of their projects. All these projects, which are described in this article, will help improve clinical trials and observational studies by improving or developing better, more sensitive ways of measuring various aspects of the disease. As Lord Kelvin stated, “To measure is to know. If you cannot measure it you cannot improve it.” The Scleroderma Clinical Trials Consortium is dedicated to improving the lives of patients with systemic sclerosis and it is our hope that the contributions of the working groups will be one important step in this process.


2018 ◽  
Vol 29 (2) ◽  
pp. 70-72
Author(s):  
ASMM Rahman ◽  
MB Uddin

Juvenile systemic sclerosis (JSS) is a multisystem disorder as well as rare disease of childhood, and the amount of published data is limited. It appears that its clinical presentation differs from adult disease and the limited form affects only very few children. The organ involvement pattern differs also from the adult form. Prognosis seems to be better with a 5-yr survival of 95% of the JSS patients. Though the incidence is very rare but we describe a 10-yr-old boy who presented with typical features of JSS.TAJ 2016; 29(2): 70-72


2018 ◽  
Vol 3 (2) ◽  
pp. 189-190 ◽  
Author(s):  
Timothy Beukelman ◽  
Fenglong Xie ◽  
Ivan Foeldvari

Juvenile systemic sclerosis is a very rare orphan disease. To date, only one publication has estimated the prevalence of juvenile systemic sclerosis using a survey of specialized physicians. We conducted a study of administrative claims data in the United States using the International Classification of Diseases, Ninth Revision diagnosis codes and found a prevalence of approximately 3 per 1,000,000 children. This estimate will inform the planning of prospective studies.


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