Number of members: 41 members
Members of the core team:
- Chair: Clare Pain (elected in September 2023)
- Secretary: Giorgia Martini (elected in September 2023)
- Lead of science & research pillar: Ozgur Kasapcopur
- Lead of training & education pillar: Edoardo Marrani
- Lead of clinical care pillar: Ivan Foeldvari
- FESCA patient/parent representative: Lynda Schraven
- AHP representative: post currently empty
- EMERGE representative: Aybuke Gunalp and Francesca Tirelli
- Charge for cooperation with CARRA: Suzanne Li and Cassie Torok
Contacts
- Chair: Clare Pain clare.pain@alderhey.nhs.uk
- Secretary: Giorgia Martini Giorgia.martini@uniud.it
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.
