Auto-inflammatory working party
Content to be coming soon
Imaging working party
The Imaging WP was created in 2014 in Belgrade (Serbia) with approval of the PReS council, with the aim to promote knowledge, research and education on Imaging in pediatric patients within the PRES frame. The 2nd IWP took place in Rome (Italy), during the 2015 EULAR/PRES congress with increasing number of attendants (from 9 to 20); at the Annual Meeting held in Genoa (Italy), 2016, the 22 participants came from 13 different countries (Croatia, Czech-Republic, Denmark, France, Germany, Greece, Italy, Netherlands, Norway, Serbia, Slovenia, Spain, Switzerland).
During the Imaging WP, an update on the activities in the previous year is given, with mention to publications/abstracts presented, ongoing projects and educational activities; further, is possible to present and discuss new projects for collaborative studies.
Ongoing project 2016-17: EULAR standardised procedures for Ultrasound (US) imaging in pediatric rheumatology (Guidelines for musculoskeletal US in pediatric rheumatology), EULAR CLI087. Project leaders: Jelena Vojinovic, Paz Collado (for information: firstname.lastname@example.org).
Project proposals 2016-17:
- US monitoring patients in the French JIR Cohort (email@example.com)
- Validation of normal age- and sex-related sonographic findings of the knee in JIA patients (firstname.lastname@example.org)
- Applicability of standardized ultrasound examination to estimate disease activity in combination with JADAS and inflammation markers in JIA patients (email@example.com)
- S100A12 proteins and MSUS in JIA (firstname.lastname@example.org)
Ongoing Educational activities: 1°EULAR/PRES course: Madrid 2017, preceding EULAR 2017
Juvenile dermatomyositis (JDM) working party
To bring together clinicians and JDM researchers to formulate strategies to increase knowledge; hereby to facilitate research on outcome measures and clinical guidelines
MD, PhD Helga Sanner, Section of paediatric rheumatology and Norwegian National Advisory Unit on Rheumatic Diseases in Children and Adolescents, Oslo University Hospital, Oslo, Norway, elected September 2016
MD Walter Sifuentes Giraldo, Hospital Universitario Ramón y Cajal, Madrid, Spain, elected September 2016
Approximately 20 people attend annually
The WP arranges a meeting annually at the Paediatric Rheumatology Congress; interested members are invited by e-mail
- Consensus Based Recommendations for the Management of Juvenile Dermatomyositis (SHARE recommendations) for diagnosis and treatment of JDM (Ann Rheum Dis. 2016)
- Criteria for Minimal, Moderate, and Major Clinical Response for Juvenile Dermatomyositis: An ACR/EULAR/IMACS/PRINTO Collaborative Initiative (A&R 2017)
- Outcome measures for JDM
- Minimal/optimal core data set for JDM
- Minimal/optimal core data set
- Implementation of the SHARE recommendations
- In collaboration with Health Professionals in Pediatric Rheumatology (HPPR)+ IMACS interest group Rehab and exercise: Exercise training in JDM.
- Use of the Euromyositis database will facilitate collaboration within the WP
- Chair: Helga Sanner (email@example.com)
- Secretary: Charalampia Papadopoulou (firstname.lastname@example.org)
Lupus working party
The PRES SLE Working Party is an international, multi-disciplinary, multi-professional group of clinicians, academics, scientists and trainees from across Europe and beyond. They gather each year at PRES to share their expertise, activities and proposals for collaborative clinical studies in childhood-onset systemic lupus erythematosus (cSLE) and paediatric anti-phospholipid syndrome (APS), and work throughout the year to take them forward.
- To share expertise, activities and proposals for collaborative clinical studies in cSLE and paediatric APS
- To support the development of specific studies and/or initiatives agreed by the group as important for improving the care and understanding of cSLE and paediatric APS
- To update and share progress with colleagues on local, national and/or international initiatives and projects related to cSLE and paediatric APS
- To foster educational initiatives supported by PRES in relation to cSLE and paediatric APS
Over 80 people from across the globe participate in the group’s mailing list. All receive minutes and slides of the talks. Attendance at the face to face meeting ranges between 25-35 people per year, depending on other clashes with other Working Parties (2016). The group works closely with many of the other PRES Working Parties.
A wide range of activities are supported, and all members are warmly invited to bring proposals to the annual meetings. Current activities are summarized in the Annual Report. Key on going initiatives include:
SHARE: Lupus and APS Recommendations
- A series of internationally agreed, evidence-based recommendations regarding the diagnosis and management of cSLE and paediatric APS, including lupus nephritis and neuropsychiatric lupus, that are currently being published.
- Developing a minimal clinical cSLE dataset.
- Use of corticosteroids in cSLE.
- Support for the paediatric-related work arising from the international APS Conference
Download the SLE working party report
- Chair: Michael Beresford (M.W.Beresford@liverpool.ac.uk)
- Deputy Chair: Tadej Avcin (email@example.com)
- Secretary: Sylvia Kamphuis (firstname.lastname@example.org)
Macrophage Activation Syndrome (MAS) working party
- To foster activities in clinical and basic research in the field of macrophage activation syndrome (MAS)
- Chair: Prof A.V. Ramanan, Bristol Royal Hospital for Children & Royal National Hospital for Rheumatic Diseases
- Secretary: Prof Marija Jelusic, Division of Paediatric Rheumatology and Immunology, University of Zagreb School of Medicine, University Hospital Centre Zagreb, Croatia
- Approximately 20 members attend annually.
- Ongoing projects
- International MAS/secondary HLH register - a collaborative effort between the rheumathology (PRES/PRINTO/CARRA) and the HS and ESID
- New nomenclature for HLH and MAS – for the International Classification of Diseases 11th Revision (ICD 11) - work conducted by the Working Group on Nomenclature (Histiocyte Society, MAS, ESID)
- Distinct change patterns of laboratory biomarkers in MAS complicating systemic juvenile idiopathic arthritis: a latent growth mixture model analysis)
- Development and initial validation of the MH score a diagnostic tool that differentiates primary HLH from MAS
- New classification criteria in cases of MAS occurring during treatment with biologics (IL-1 and IL-6 inhibitors)
- The RESYST initiative (resistant/severe sJIA with a major focus on MAS - study genetics, gene expression profile and an extended panel of biomarkers. Multicenter effort: PReS, CARRA, U-CAN, American sJIA foundation)
- Marija Jelusic (email@example.com)
Scleroderma working party
Content to be coming soon
Uveitis working party
Aim of the Working group is:
- To forester activities in clinical and basic research regarding juvenile idiopathic arthritis related uveitis.
- To improve the quality of care for patients with juvenile idiopathic arthritis related uveitis.
- Currently 25 members, all members of the PRES, belong to the group
- To establish an assessment sheet, possibly electronic, for ophthalmologist in order to improve and standardize the communication between paediatric rheumatologist and ophthalmologist
- To work on the implementation of the SHARE Uveitis guidelines (publication is in preparation)
- To develop and validate outcome measures for juvenile idiopathic arthritis related uveitis.
Vasculitis working party
Chair: Dr Marija Jelusic
Secretary: Dr Despina Eleftheriou
To facilitate translational research in the field of vasculitis of the young. This encompasses basic science with potential to improve patient care; molecular genetics; clinical trials (investigator led and industry sponsored); and clinical guidelines.
- Chair: Prof Paul Brogan: Prof of vasculitis, University College London GOS Institute Of Child Health
- Secretary: Prof Marija Jelusic: Associate Professor of Paediatrics, Head, Referral Centre for Paediatric Rheumatology Republic of Croatia, Division of Paediatric Rheumatology and Immunology, University of Zagreb, School of Medicine University Hospital Centre Zagreb
Approximately 20-40 members attend annually.
- SHARE vasculitis papers
VIP next generation sequencing panel
- Chair: Marija Jelusic (firstname.lastname@example.org)
- Secretary: Despina Eleftheriou (email@example.com)
Annual report (2017)