Working parties

Welcome to Working Parties 2.0

Download the presentations of reformed working parties and learn more in this section of the website.

WP 2.0 Presentation

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

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.

Contacts:

Chair: Silvia Magni-Manzoni (silvia.magnimanzoni@opbg.net)
Secretary:Jelena Vojinovic (vojinovic.jelena@gmail.com)
 
2018 Report:

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

Number of members:currently around 15

Members of the core team:

  • Chair: Ivan Foeldvari
  • Secretary: to be appointed
  • Lead of science & research pillar: Clare Pain
  • Lead of training & education pillar: Giorgia Martini
  • Lead of clinical care pillar: Valentina Leone
  • Charge for cooperation with CARRA – Suzanne Li and Cassie Torok

Aim of the WP
Current aim to develop outcome measures to assess the disease, which can be applied in future clinical trials

Goals in each pillar for 2019-2020

Goal for training and education:

  • To set up the first PRES juvenile scleroderma education course
  • Promote active involvement of trainees within the WP

Goal for clinical care and research:

  • To develop/adopt information materials to different European languages for parents and patients
  • To conduct a cross-cultural adaptation in possibly all European languages of a localized scleroderma specific quality of life instrument
  • Consider next steps to evaluate quality of life instruments with clinical assessment of cutaneous and extracutaneous involvement of localized scleroderma prospectively

Educational activities (ongoing/planned):

  • To set up the first PRES Scleroderma course

Activities in science & research:

See goals

Achieved projects/publications:   

1.          Constantin T, Foeldvari I, Pain CE, et al. Development of minimum standards of care for juvenile localized scleroderma. Eur J Pediatr 2018;177:961-77.

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

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:

The composition:

  • Chair: 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

2019 Report

Contacts

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

Young investigator representative: Masa Bizjak 

The Vaccination Working Party (WP) is the newest of the PRES working parties. Its main objective is to develop a platform for multicentre collaborations. Vaccination recommendations for paediatric rheumatology patients are based on low levels of evidence, so multicentre studies are needed. 

What has already been done so far?

At the 2018 PRES Congress in Lisbon, we presented an abstract titled:

Challenges in achieving consensus for vaccination with live attenuated vaccines in children with rheumatological disease - the variability in vaccination practices across the globe

On the 2019 EULAR/PRES Congress in Madrid, we will present two abstracts:

Live attenuated vaccines in pediatric rheumatic diseases are safe: Multicenter, retrospective data collection.

An international survey on approaches to immunization in children with rheumatic diseases: a report of the PReS Vaccinations Working Group.

Ongoing and Future plans

  • Prospective study of Safety and efficacy of live attenuated vaccines for paediatric rheumatology patients
  • Efficacy of live attenuated vaccines - MMR/V in cross-sectional study
  • Long-term efficacy of vaccines for pediatric rheumatology patients - do we need booster doses?
  • Promoting vaccinations
  • Education for health professionals
  • Communication with children and their parents (ENCA)

Prospective study

Background: The study on safety of MMR booster in children treated with biologic therapy and DMARDs/MTX was initiated by the PRES Vaccination WP because we believe it is important to protect patients undergoing immunosuppressive therapy, against preventable diseases, using live attenuated vaccines, as needed. In the light of measles epidemics in Europe and in the US protection against measles is mandatory. Some doctors in the rheumatology community already vaccinate patients treated with methotrexate and/or biologics with booster MMR because the risk of vaccination is much lower than the risk of disease. To confirm this statement, we gathered retrospective data from 13 paediatric rheumatology centres in 10 countries. The abstract was selected for oral presentation at the 2019 EULAR/PRES meeting. Based on this retrospective information, we are launching a prospective study on safety and efficacy of MMR booster vaccine in paediatric rheumatology patients treated with immunosuppressive therapy, including biological therapy.

We would like to invite all members of the PRES community to join us, especially young investigators, young doctors from EMERGE group, and all others who have interest in this field.

e-mail: natasa.toplak@kclj.si, Natasa Toplak, chair of Vaccination WP

e-mail: uziely@zahav.net.il, Yosef Uziel, secretary of Vaccination WP

Chair: Marija Jelusic 

Secretary: 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: Marija Jelusic

  • Secretary: Despina Eleftheriou 

  • Lead of science and research: Ezgi Deniz Batu  

  • Lead of education and training: Teresa Giani 

  • Lead of clinical care:  Neil Martin 

Approximately 30-40 members attend annually. In 2018, 10 young investigators (EMERGE group) joined our working party. 

 

The activities: 

Ongoing projects: 

  • Paediatric Vasculitis Damage Index (pVDI)  

  • Development and Validation of Juvenile VAsculitis Multidimensional Assessment Report (J-VAMAR)  

  • PEPRS "Pediatric polyangiitis rituximab study" 

  • MYPAN “An open label randomised controlled trial of mycophenolate mofetil versus cyclophosphamide for the induction of remission of childhood polyarteritis nodosa” 

  • VIP next generation sequencing panel 

New clinical trials: 

  •  KD-CAP (Kawasaki Disease Coronary aneurysm prevention) “Multi-centre, prospective, randomised, open-label, blinded end-point study of prednisolone plus intravenous immunoglobulin (IVIG) for prevention of coronary artery complications in acute Kawasaki disease" 

  • BIOVAS “A pragmatic, randomised, double-blind, placebo-controlled, modified-crossover trial of biologic therapy for refractory vasculitis in adults and children” 

Project proposals 

  • "Histological and clinical predictors of outcome in Henoch–Schönlein purpura nephritis" 

 

Contact 

 

Annual report (2018)

Download report

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