Datum/Zeit:
09.11.2020, 20:00 - 22:00 Uhr
Veranstaltungsort:
Zoom meeting
Program for the juvenile scleroderma working group meeting at the ACR
Monday 09th of November from 20.00 Central European time / 14.00 East coast time
Welcome
Ivan Foeldvari
14.05 – 14.17 (East coast time)
Raynaud’s phenomenon: a UK survey against the PRES Scleroderma Working Group recommendations. Valentina Leone, Department of Paediatric Rheumatology, Leeds, UK
14.18 – 14.30
Update of the juvenile systemic scleroderma inception cohort. Ivan Foeldvari, Hamburg Centre of Pediatric and Adolescent Rheumatology, Hamburg, Germany
14.31 – 14.43
How to asses ILD? Data from the inception cohort? Kathryn S. Torok, Children’s Hospital of Pittsburgh, Pittsburgh, PA, USA
14.44 – 14.58
Cardiovascular involvement as clue for diagnosis juvenile systemic sclerosis sine scleroderma. Giorgia Martini, University Children’s Hospital, Padua, Italy.
14.59 – 15.11
What is the ideal activity measure for juvenile systemic scleroderma trials. Jens Klotsche, Deutsche Rheumaforschungszentrum, Berlin , Germany
15.12 – 15.24
Cross-cultural adaptation and validation of the LoSQI (Localised scleroderma Quality of life Instrumen. Clare Pain, Alder Hey Children’s NHS Foundation Trust, Liverpool, UK
15.25 – 15.36
Morbidity in Juvenile Localized Scleroderma: Capturing Cutaneous and Extracutaneous involvement with the Total Morbidity Score. Suzanne Li, Joseph M. Sanzari Children’s Hospital, Hackensack Meridian Health, Hackensack, NJ, USA
15.37 – 15.49
Families and Physicians Partnering to Develop a Pediatric Scleroderma Website. Christina Locke, Scleroderma Foundation, USA; Suzanne Li, Joseph M. Sanzari Children’s Hospital, Hackensack Meridian Health, Hackensack, NJ, USA
15.50 – 15.55
Update on the PRES Scleroderma Educational course. Giorgia Martini, University Children’s Hospital, Padua, Italy
15.55 – 16.00
Open topics
End of the meeting