Aims
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Bring together clinicians and JDM researchers to increase knowledge and facilitate research in JDM, working collaboratively on an international platform.
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Apply the PReS 3-pillar struture to JDM: advancing basic sceince, clinical care / clinical science and education / training.
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Work closely with other working parties and EMERGE on shared initiatives.
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Utilise published standards of care in JDM and work with patient / parent groups to promote good practice and disseminate knowledge.
The composition:
Chair:
Charalampia Papadopoulou, elected September 2023
Secretary:
Silvia Rosina, elected September 2023
Other core members:
- Representative for basic science pillar: Saskia Veldkamp
- Representative for clinical care and clinical science pillar: Rebecca Nicolai
- Representative for the education/training pillar: Brigitte Bader-Meunier
- Representative for EMERGE: Raquel Campanilho-Marques (Portugal)
- Allied Health Professional Representatives: Sara Rostlund (Sweden) and Mette Nørgaard (Denmark)
- Patient representatives: TBC
- Parent representative: Joanne Swan (Scotland)
- Past Chair: Liza McCann
- Past Chair: Helga Sanner
- Past Secretary: Meredyth Wilkinson
- Past Representative of education: Raquel Campanilho-Marques
The activities:
The WP arranges a meeting annually at the Paediatric Rheumatology Congress; members are invited by e-mail. Open invite – all welcome.
Contacts
- Chair: Charalampia Papadopoulou: Charalampia.Papadopoulou@gosh.nhs.uk
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Secretary: Silvia Rosina: SilviaRosina@gaslini.org
Documents and materials:
- JDM working group research collaborative working document [April 2024]
- JDM working group educational resources [April 2024]
- JDM PReS Working Party and Euromyositis position statement
- Myositis Specific Antibodies - Narrated Power Point
- MMT8 instructions and starting positions
- Quick reference guide to interpretation of Myositis Specific Antibodies for healthcare professionals
