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:

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 Rostland (Sweden) and Mette Nørgaard (Denmark)
  • Patient representatives: Alannah Murray (Ireland)
  • 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

Number of members:currently around 15

Members of the core team:

  • Chair: Ivan Foeldvari
  • Secretary: Ozgur Kasapcopur
  • Lead of science & research pillar: Clare Pain
  • Lead of training & education pillar: Giorgia Martini
  • Lead of clinical care pillar: Valentina Leone
  • FESCA patient/parent representative - is pending
  • 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

Number of members: 30 members

Members of the core team:

Contact person: Natasa Toplak- natasa.toplak@kclj.si

EMERGE representative: Masa Bizjak

Patient/Parent representative: Saskya Angevare

Aim of the WP: The main objective is to form a platform for multicentre collaboration. Recommendations for vaccination in paediatric rheumatology patients are based on low level of evidence so multicentre studies are needed.

Goals in each pillar for 2019-2020:

Educational activities (ongoing/planned): education for health professionals, education material / presentation for the PRES website; to include vaccinations in PRES special courses for rheumatic diseases

Activities for clinical care (ongoing/planned): Promotion of vaccination, connection with parent organization, vaccinations in developing countries

Activities in science & research:

  • Achieved projects/publications (the most recent ones, max 3):

    On the PRES congress in Lisbon 2018 we already presented the first abstract with the title: Challenges in achieving consensus for vaccination with live attenuated vaccines in children with rheumatological disease- the variability of vaccination practices across the globe

    On the EULAR / PRES congress in Madrid 2019 presented two abstracts: Live attenuated vaccines in pediatric rheumatic diseases are safe: Multicenter, retrospective data collection- article sent for publication and An international survey on approaches towards immunization in children with rheumatic diseases: a report of the PReS Vaccinations Working Group


  • Ongoing projects and whom to contact to be involved in each project: contact natasa.toplak@kclj.si

    Safety and immunogenicity of live attenuated vaccines in paediatric rheumatology patients in prospective study / Long term efficacy of vaccines in paediatric rheumatology patients- do we need booster doses?

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

Educational presentation

Number of members: around 50

Members of the core team:

Contact persons:

EMERGE representative: Mario Sestan (mario.sestan@gmail.com)

Patient/Parent representative: TBA

Aim of the WP: 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.

Goals in each pillar for 2019-2020: TBA

Educational activities (ongoing/planned):

  • First European Congress on Kawasaki Disease EURO – KiDs Congress 2020, July 7-8th 2020, Paris, France.  A first event in Europe!!!, A half-day workshop: “Kawasaki disease, autoinflammation and beyond” aimed to gather experiences on new treatment targets, biomarkers, and integrated research strategies. A two-day main meeting aimed to update on clinical innovation, recommendations, basic science, and sharing clinical experiences.

Activities for clinical care (ongoing/planned):

  • the implementation of existing diagnostic and treatment recommendations into clinical practice and development of new recommendations with translations to other languages;
  • to encourage the application of clinical questionnaires in assessing the quality of life and disease activity;
  • encourage the issuance and use of brochures and educational materials for patients and their family members that will be available online;
  • connection with organizations of patients and their parents to better understand their needs;
  • to develop web-based platform for healthcare professionals with virtual panels in order to discuss difficult cases in the field of vasculitis with the possibility of sharing medical imaging

Activities in science&research:

  • Achieved projects/publications (the most recent ones, max 3):
  1. Jelusic M, Sestan M, Cimaz R, Ozen S. Different histological classifications for Henoch-Schönlein purpura nephritis: which one should be used? Pediatr Rheumatol Online J, 2019;17:10.

  2. Ozen S, Marks SD, Brogan P, Groot N, de Graeff N, Avcin T, Bader-Meunier B, Dolezalova P, Feldman BM, Kone-Paut I, Lahdenne P, McCann L, Pilkington C, Ravelli A, van Royen A, Uziel Y, Vastert B, Wulffraat N, Kamphuis S, Beresford MW. European consensus-based recommendations for diagnosis and treatment of immunoglobulin A vasculitis-the SHARE initiative. Rheumatology (Oxford). 2019; 58(9):1607-1616.

  3. de Graeff N, Groot N, Brogan P, Ozen S, Avcin T, Bader-Meunier B, Dolezalova P, Feldman BM, Kone-Paut I, Lahdenne P, Marks SD, McCann L, Pilkington C, Ravelli A, van Royen A, Uziel Y, Vastert B, Wulffraat N, Kamphuis S, Beresford MW. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides - the SHARE initiative.Rheumatology (Oxford). 2019;58(4):656-671

  • Ongoing projects and whom to contact to be involved in each project:
  1. Comparison of pediatric criteria with adult classification criteria in granulomatosis with polyangiitis (PI – Seza Ozen (sezaozen@gmail.com)

  2. KD-CAAP study “Multi-centre, randomised, open-label, blinded endpoint assessed, trial of corticosteroids plus intravenous immunoglobulin (IVIG) and aspirin, versus IVIG and aspirin for prevention of coronary artery aneurysms in Kawasaki disease." (PI-Despina Eleftheriou (d.eleftheriou@ucl.ac.uk), and Paul Brogan (p.brogan@ucl.ac.uk)

  3. Histological predictors of outcome in patients with Henoch-Schonlein purpura and nephritis“  (PI - Marija Jelusic (marija.jelusic.drazic@gmail.com)

Downloads:

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