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: Teresa Giani, Anna Meyer Children Hospital, Florence, Italy (teresa.giani@gmail.com)
- 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)
- EMERGE representative: Mario Sestan (mario.sestan@gmail.com)
Contact persons:
- Marija Jelusic (marija.jelusic.drazic@gmail.com),
- Teresa Giani (teresa.giani@gmail.com)
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):
- 1st PReS Educational Course "Vasculitis in paediatric age" a 1,5 day hybrid meeting in the February 2022, comprehensive training on main systemic vasculitides, new multidisciplinary diagnostic approaches, latest scientific advances, recent recommendations and guidelines for the treatment. Inernational expert speakers. The registration will be online (PReS website), limited subscriptions available. More information will be soon available on the PReS website! Write us your interest/questions: Teresa Giani (teresa.giani@gmail.com), Marija Jelusic (marija.jelusic.drazic@gmail.com)
- 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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