18th Hamburg Symposium on Juvenile Sclerosis

How do we define “progressive disease” in juvenile systemic sclerosis? Are there distinct trajectories?

Programme

10.-10.10
Introduction – Ivan Foeldvari
Chairman: Vanessa Smith and Ivan Foeldvari

How do we define “progressive disease” in systemic sclerosis? Lessons from adult cohorts?

10.10 – 10.30
Event-driven progression based on the data of the Royal Free cohort. Chris Denton, Division of Medicine, University College London, London, UK

10.30.-10.50
Event-driven progression based on the data on the EUSTAR cohort. Francesco del Galdo

10.50-11.10
Event-driven progression based on the data of the Australian cohort. TBA, Melbourne, Australia

11.10- 11.30
How is progression best defined in SSc. John Pauling

11.30.-12.00
Roundtable – Question & Answers

12.-12.20
Coffee break

Chairman: Chris Denton and Clarissa Pilkington

12.20.- 12.40
Proposal for trajectories of progressive disease in juvenile systemic sclerosis from the published literature. Ivan Foeldvari

12.40-13.00
Characteristics of patients with progressive disease in the juvenile systemic sclerosis inception cohort looking at 6, 12 and 24 months- Jens Klotsche /Ivan Foeldvari

13.-13.20
Characteristics of patients with progressive disease at 6, 12 and 24 months in the National Registry of Childhood onset systemic Sclerosis – Cassie Torok /Jon Li

13.20- 13.40
Roundtable – Question & Answers

13.40- 14.30
Lunch Break

14.30 -18.00

Proposal of the working groups:
How do we define “progressive disease” in systemic sclerosis? Are there known trajectories?

Report of the working groups and associated talks: All speakers are presenting bullet points and key questions to the group at the end of their talk. Each talk can be up to 20 minutes and 10 minutes discussion

Chairman: Patricia Costa Reis and Maurizio Cutolo

14.30-16.15
Proposal of the working groups:

1. Cutaneous involvement – Catherine Orteu, Ivan Foeldvari, Cassie Torok and Pia Moinzadeh
2. Musculoskeletal Involvement –Suzanne Li and Jordi Anton
3. Interstitial lung disease – Jon Li ; Cassie Torok, Ivan Foeldvari and Bernd Hindrichs

16.15- 16.30
Coffee Break

Chairman Suzanne Li and John Pauling

16.30-18.15
Proposal of the working groups:

1. Cardiac involvement and pulmonary hypertension–Eduardo Marrani, Clarissa Pilkington, Peer Hauck,
2. Raynauds and vascular involvement – Clare Pain
3. Renal involvement – Patricia Costa Reis
4. Gastrointestinal Involvement – Cassie Torok

18.15-18.25

Closing Remarks: Ivan Foeldvari

The symposium is supported by an unrestricted founds by:

Principal Investigator: Ivan Foeldvari (Paediatric Rheumatologist, Hamburger Zentrum für Kinder- und Jugendhreumatologie, Hamburg, Germany)

Moderator: Vanessa Smith

Planned Participants:

• Jordi Anton / Clara Giménez Roca; (Pediatric Rheumatologist; University Children´s Hospital, Barcelona, Spain
• Cosimo Bruni, (Adult Rheumatologist, University Zurich, Switzerland)
• Mauricio Cutolo (Adult Rheumatologist, Department of Rheumatology University Genua, Italy),
• Chris Denton (Adult Rheumatologist, Royal Free Hospital, London, UK),
• Ivan Foeldvari (Pediatric Rheumatologist, Hamburger Zentrum für Kinder- und Jugendrheumatologie),
• Kim Fligelstone (Patient Representative, FESCA),
• Peer Hauck (Pediatric Cardiologist, Hamburg),
• Francesco del Galdo, ( Adult Rheumatologist, University Leeds ; UK)
• Ozgur Kasapcopur, (Pediatric Rheumatologist, Istanbul, Turkey)
• Jens Klotsche, (Biostatistician, Berlin, Germany)John Li (Pediatric Rheumatologist, University Children’s Hospital Pittsburgh, USA),
• Eduardo Marrani (Pediatric Rheumatologist, Florence, Italy),
• Pia Moinzadeh (Department of Dermatology, University Cologne, Germany), Suzanne Li (Pediatric Rheumatologist, Hackensack University, New Yersey, USA)
• Catherine Orteu (Dermatologist, UCLA, London, UK),
• Clare Pain (Pediatric Rheumatologist, Liverpool UK)
• John Pauling (Adult Rheumatologist, Bath, UK)
• Clarissa Pilkington, (Pediatric Rheumatologist, Great Ormond Street Hospital, London , UK),
• Patricia Costa Reiss (Pediatric Rheumatologist and Nephrologist, Hospital de Santa Maria, Lisbon, Portugal),
• Laura Ross (Adult Rheumatologist Melbourne, Australia)
• Vanessa Smith (Adult Rheumatologist) Department of Rheumatology, Ghent University Hospital, Ghent, Belgium);
• Linda Schraven (Patient Representative, FESCA);
• Cassie Torok (Paediatric Rheumatologist, University Children’s Hospital Pittsburgh, USA)