Within the activities of the RITA’s Clinical Practice Guidelines working group, we are happy to share the organisation of a Juvenile dermatomyositis (JDM) International consensus meeting, focused on developing an International clinical trial with an Interferon pathway inhibitor in JDM.

In September 2023, pediatric rheumatologists, patient representatives and experts in the field of myositis will meet to discuss how to further improve treatment of children with JDM. There is a growing body of evidence that interferon inhibition in children with JDM could play an essential role in this. JDM is IFN type I/II driven and inhibitors of this pathway such as JAK inhibitors have been shown to be effective in case series of refractory patients. They might have the potential to better treat the disease and reduce the high and toxic doses of glucocorticoids when given upfront.

The idea for an international trial was presented and discussed at the Pediatric Rheumatology European Society (PReS) conference 2022 (Prague). A majority of attendees was willing to think along or participate in the development of this trial and therefore the idea for a consensus meeting was made.  In preparation for this meeting we conducted an online survey among members of the PRES JDM working party to investigate support and available expertise for conducting an international RCT of IFN-1 inhibition/modulation in newly diagnosed JDM patients. There were 31 respondents from 20 different countries. The vast majority of respondents is willing to be involved in the development of the trial and/or contribute as a participating center. Apart from physicians, multiple patient organizations, statisticians and pharmacists are involved as well.

The meeting will take place in advance of the PReS conference in Rotterdam, the Netherlands, on 26 and 27 September 2023. We aim to establish consensus on the investigational drug, feasibility and availability, design, endpoints and a plan for funding.