Working parties

Aims

1. Bring together clinicians and JDM researchers to increase knowledge and facilitate research in JDM, working collaboratively on an international platform.

2. Apply the PReS 3-pillar struture to JDM: advancing basic sceince, clinical care / clinical science and education / training.

3. Work closely with other working parties and EMERGE on shared initiatives.

4. Utilise published standards of care in JDM and work with patient / parent groups to promote good practice and disseminate knowledge.

The composition:

Chair:
Liza McCann, Paediatric Rheumatology Consultant, Alder Hey Children’s NHS Foundation Trust, Liverpool, UK, elected June 2019.

Secretary:
Meredyth Wilkinson, Institute of Child Health, University College London, UK, elected June 2019.

Other core members:

• Past Chair: Helga Sanner (Norway)
• Representative for basic science pillar: Judith Wienke (Netherlands)
• Representative for clinical care and clinical science pillar: Charris Papadopoulou (UK)
• Representative for the education/training pillar: Raquel Campanilho-Marques (Portugal)
• 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)

Attendance: Approximately 20 people attend annually

The activities:

The WP arranges a meeting annually at the Paediatric Rheumatology Congress; members are invited by e-mail. Open invite – all welcome.

Projects achieved:

• Consensus Based Recommendations for the Management of Juvenile Dermatomyositis (SHARE recommendations) for diagnosis and treatment of JDM [Bellutti Enders F et al, Ann Rheum Dis. 2017; 72(2):329-340]

• Criteria for Minimal, Moderate, and Major Clinical Response for Juvenile Dermatomyositis: An ACR/EULAR/IMACS/PRINTO Collaborative Initiative [Rider LG et al, A&R 2017, 76(5): 782-791].

• Development of a consensus core dataset in JDM for clinical use to inform research. Collaborative initiative including members of PReS working party, PRINTO Centre Directors, and members of IMACS, CARRA, UK JDRG and patient/parent groups (Myositis UK and Cure JM). [McCann LJ et al, Ann Rheum Dis 2018, 77(2):241-250]

• Collaboration with Euromyositis, including writing and promoting the use of JDM webpages for the Euromyositis registry. https://euromyositis.eu/

• Sharing knowledge on projects relevant to all members including the development of an internationally agreed biopsy scoring tool (Varsani H et al, Ann Rheum Dis 2015;74(1)204-210), an MRI-based scoring system in JDM (Thyoka M et al, Rheumatology 2018; 57(9)1661-1668), the JDM multidimensional assessment report, JDMAR (Varnier GC, Pediatr Rheumatol Online J 2013), Outcome measures JDM. (A. Ravelli / S. Rosina): JDMAI, composite disease activity score (PMID: 30690571) and hybrid MMT-8/CMAS (hMC), PMID: 29245175

• PReS/ EULAR JDM module; part of the online course in Paediatric Rheumatology https://www.eular.org/edu_online_course_paediatric.cfm?showArchive=1

Ongoing / planned projects:

• To audit the implementation of SHARE guidelines and determine current practice in Europe.
• Extension of SHARE consensus for management of JDM in North America: IMACS project.
• To work together as a group on future research ideas, which may include evaluation of patient / parent reported outcome measures and a study of fatigue / quality of sleep in JDM.
• Promote education and training in JDM, including PReS / EULAR course and other learning resources which may include resources for patients and parents.
• Promote collaboration / core dataset entry in myositis registries, including use of Euromyositis.
• Consider standardisation of testing for myositis specific antibodies.
• In collaboration with Health Professionals in Pediatric Rheumatology (HPPR) and IMACS interest group Rehab and exercise: Exercise training in JDM.
• Develop / validate other outcome measures for JDM, including PROMs and Skin Disease Activity Scores (PMID: 26881696),
• Clinical Care of calcinosis
• Multinational study on current outcomes of children with JDM.

Contacts

• Chair: Liza McCann: liza.mccann@alderhey.nhs.uk

• Secretary: Meredyth Wilkinson meredyth.wilkinson.14@ucl.ac.uk

Documents and materials:

• JDM working group research collaborative working document [March 2021]
• JDM working group educational resources [August 2021]
• 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