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Table 1 (abstract P271). See text for description

From: Proceedings of the 28th European Paediatric Rheumatology Congress (PReS 2022)

Clinical care:

Lead – C. Papadopoulou

Science & research:

Lead – S. Veldkamp

Education & training:

Lead – R. Campanilho-Marques

Collaborative working:

Lead – L.McCann / H. Sanner

Study of sleep / fatigue in JDM. Work in progress for revised grant submission (CP).

Collaborative opportunities in basic science /translational research.

Podcast - Myositis Specific Antibodies available on PReS website JDM WP tab (as well as narrated PowerPoint on MSAs & training tools for MMT8 / CMAS).

CARRA / PReS JDM WP SIG: Study on physical activity in JDM - Research proposal circulated for comments April 2022 (HS).

Survey of practice in JDM / SHARE survey – write up in progress (OKC).

Updates given during meetings.

Preparing MCQ questions for PReS Knowledge Based Exam.

CARRA / PReS JDM WP SIG: Telemedicine in JDM – survey in progress.

Publication: Rational for a position statement on Developmentally appropriate Transitional Care during the Covid pandemic: McDonagh J et al, Pediatric Rheumatology (2021) 19: 136. https://doi.org/10.1186/s12969-021-00609-y

Open educational session Nov 2021: What’s wrong with tools in JDM (Brian Feldman).

Planning JDM course 2023.

IMACS / PReS JDM WP SIG: Extension of the Single Hub & Access point for paediatric Rheumatology in Europe (SHARE) consensus guidance; survey prepared, to be distributed after IRB approval.

  1. Abbreviations: CARRA - Childhood Arthritis & Rheumatology Research Alliance. SIG – Special Interest Group. IMACS - International Myositis Assessment & Clinical Studies Group