Abstract
There was consensus that the expert panel should also include expert pediatric neurologists. [...]2 pediatric neurologists with special expertise in managing JDM (W. M-F. and U.S.) were also invited to join the group, forming an extended interdisciplinary expert panel. [...]anonymous voting took place during which each participant could either accept or reject the respective statement via an electronic audience response system. Eventually, there was consensus that there is not enough evidence to consider HCQ a DMARD sensu stricto. [...]in order to avoid the (mis)use of HCQ in case of refractory disease as a means to intensify therapy, it was opted to define HCQ as a supportive agent for the purpose of this project. [...]we think that it would be reasonable to apply the validated set of criteria by either IMACS or PRINTO [41, 42]. Since there is a relative lack of data from randomized controlled clinical trials (RCTs), and since it is unlikely that large-scale RCTs for JDM will take place, one possible solution to gather more information on the efficacy or inefficacy of various treatments may be to collect “real life” data on disease outcome, i.e. to pursue comparative effectiveness research [43].
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