Juvenile scleroderma working party

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.

Download 2020 report