Vasculitis working party

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)

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