Number of members: around 50
Members of the core team:
- Chair: Marija Jelusic, Univeristy of Zagreb School of Medicine, Zagreb, Croatia (marija.jelusic.drazic@gmail.com)
- Secretary: Despina Eleftheriou, UCL Great Ormond St Institute of Child Health, London, UK (d.eleftheriou@ucl.ac.uk)
- Lead of science&research pillar: Ezgi Deniz Batu, Ankara Training and Research Hospital, Ankara, Turkey (ezgidenizbatu@yahoo.com)
- Lead of training&education pillar: Teresa Giani, Anna Meyer Children Hospital, Florence, Italy (teresa.giani@gmail.com)
- Lead of clinical care pillar: Neil Martin, Royal Hospital for Children, Glasgow, Scotland (neil.martin@ggc.scot.nhs.uk)
Contact persons:
- Marija Jelusic (marija.jelusic.drazic@gmail.com),
- Despina Eleftheriou (d.eleftheriou@ucl.ac.uk)
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):
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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.
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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.
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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:
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Comparison of pediatric criteria with adult classification criteria in granulomatosis with polyangiitis (PI – Seza Ozen (sezaozen@gmail.com)
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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)
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Histological predictors of outcome in patients with Henoch-Schonlein purpura and nephritis“ (PI - Marija Jelusic (marija.jelusic.drazic@gmail.com)
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