Working parties

Auto-inflammatory working party

The aims
To promote knowledge and international multidisciplinary collaboration among experts in the field of systemic autoinflammatory disorders (AID). The AID working party brings together clinicians, scientists and geneticists in order to improve understanding, care and outcome of patients with AID.

The composition:
Chair: MD Véronique Hentgen, French reference center for autoinflammatory diseases and secondary amyloidosis (CEREMAIA), Versailles Hospital, France.

Secretary: Federici Silvia

Some further persons are involved in the AID working party and are particularly concerned with

  • Clinical affairs: Antonella Insalaco
  • Educational affairs:  Roberta Caorsi  
  • Research affairs: Jürgen Brünner  

The activities:
The WP arranges a meeting annually at the Paediatric Rheumatology Congress; interested members are invited by e-mail.

Ongoing projects on educational affairs

Ongoing projects on clinical affairs

Guidelines and standard of treatment / recommendations for a rational use of biologic agents in AIDs

  • Survey of existing recommendations in different countries
  • Provide the existing recommendations on an European level.
  • PReS endorsement of already existing recommendations (English) with translations to other European languages.

Ongoing projects on research affairs

  • Activity score for AID (lead : Gaslini institute, Italy)
  • Severity score and quality of life for AID (lead : CEREMAIA, France)

Contacts

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: vojinovic.jelena@gmail.com).

Project proposals 2016-17:

- US monitoring patients in the French JIR Cohort (linda.rossi@aphp.fr)

- Validation of normal age- and sex-related sonographic findings of the knee in JIA patients (d.windschall@asklepios.com)

- Applicability of standardized ultrasound examination to estimate disease activity in combination with JADAS and inflammation markers in JIA patients (vojinovic.jelena@gmail.com)

- S100A12 proteins and MSUS in JIA (severine.guillaume@aphp.fr)

Ongoing Educational activities: 1°EULAR/PRES course: Madrid 2017, preceding EULAR 2017

Contacts:
Chair: Silvia Magni-Manzoni (silvia.magnimanzoni@opbg.net)
Secretary:Jelena Vojinovic (vojinovic.jelena@gmail.com)
 
2017 Report:

Juvenile dermatomyositis (JDM) working party

The aims
To bring together clinicians and JDM researchers to formulate strategies to increase knowledge; hereby to facilitate research on outcome measures and clinical guidelines

The composition:
Chair:
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

Secretary:
MD Walter Sifuentes Giraldo, Hospital Universitario Ramón y Cajal, Madrid, Spain, elected September 2016

Approximately 20 people attend annually

The activities:
The WP arranges a meeting annually at the Paediatric Rheumatology Congress; interested members are invited by e-mail

Projects achieved:

  • 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)

Ongoing projects:

  • Outcome measures for JDM
  • Minimal/optimal core data set for JDM
  • Minimal/optimal core data set

Plans:

  • 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

Contacts

Lupus working party

Overview

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.

Aims

  • 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

Composition

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.

Activities

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

2017 Report

Download the SLE working party report

Contacts

Macrophage Activation Syndrome (MAS) working party

The aim: 
  • to promote knowledge and international multidisciplinary collaboration among experts in the field of macrophage activation syndrome (MAS) 

  • to foster translational research in order to improve care and outcome of patients with MAS 

The composition:

Over 50 PReS members participate in the group’s mailing list.  The WP arranges a meeting annually during the PReS Congress and all members are invited by e-mail.

 

 

The activities: 

Ongoing projects:

  • “New diagnostic criteria for primary HLH” promoted by Jan-Inge Henter and AnnaCarine Horne (Karolinska Institute, Stockholm, Sweden) on behalf of the HLH Diagnostics WG of the Histiocyte Society in collaboration with the MAS WP
    (Jan-Inge.Henter@ki.se ; annacarin.horne@karolinska.se)

 

  • “Validation of a risk score for MAS in sJIA patients” promoted by Claudia Bracaglia (Ospedale Pediatrico Bambino Gesù, Rome, Italy; claudia.bracaglia@opbg.net)

 

  • “Thrombotic microangiopathy in patients with MAS/sHLH” promoted by Francesca Minoia (Ospedale Maggiore Policlinico, Milan, Italy; francesca.minoia@policlinico.mi.it)
Contacts:

•           Claudia Bracaglia (claudia.bracaglia@opbg.net)

•           Francesca Minoia (francesca.minoia@policlinico.mi.it)

2017 Report:

Scleroderma working party

Content to be coming soon

Uveitis working party

The composition:

  • Chair: Ivan Foeldvari, Head of the Hamburger Zentrum für Kinder- und Jugendrheumatologie
  • Secretary: Gabriele Simonini, Associate Professor of Paediatrics, Paediatric Rheumatology Unit, Anna Meyer Children’ Hospital, Florence

Formally born on 2016 during the PRES meeting held in Genoa, the WP at the present consists of 25 members, all belonging to PRES. The members participate in the group’s mailing list. The WP arranges a meeting annually during the PReS Congress and all members are invited by e-mail. Approximately 20-40 members attend annually. A specific and customized mailing list is regularly keep updated in order to stay in touch members over the year

Aim of the Working group are:

  • To set up an opthalmologist and rheumatologist network of physicians interested in childhood uveitis
  • 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.

During the WP, an update on the activities in the previous year is given, as well as ongoing and new projects are presented. Anyone is strongly invited to present new ideas and projects in a collaborative fashion. A difficult and challenge case section is also reserved for general discussion and considerations

Ongoing projects

  • To establish an assessment sheet of uveitis, possibly electronic, in order to improve and standardize the communication between paediatric rheumatologist and ophthalmologist
  • Implementation and update of the SHARE Uveitis guidelines
  • Cross Cultural Adaption of the EYEQL in most European languages
  • Planning of a prospective registry of Juvenile Non-infectious Uveitis patients, founding is needed

2016 Report

Contacts

Vaccination working party

Chair: Nataša Toplak (natasa.toplak@kclj.si)
Secretary: Sefi Uziel (uziely@zahav.net.il)

Education and training: Despoina Maritsi, Elena Moraitis
Science and research: Gecilmara Pileggi, Mark Jansen
Clinical care: Raju Khubchandani
ENCA representative: Saskya Angevare

Vasculitis working party

Chair: Dr Marija Jelusic
Secretary: Dr Despina Eleftheriou

The aims:

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.

The composition:

  • 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.

The activities:

Ongoing work

  • pVDI
  • SHARE vasculitis papers
  • PedVAS
  • J-VAMAR

Clinical trials

  • PEPRS
  • MYPAN
  • BIOVAS
  • KDCAP

Other projects

  • VIP next generation sequencing panel

Contact

 

Annual report (2017)

Download report

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