- Juvenile systemic sclerosis is an orphan autoimmune disease with an incidence of approximately 1 in 1.000.000 children
- Currently just retrospective data exist regarding of organ involvement
- Most studies did not included a standardized assessment of the organ systems and quality of life
- Our project is the first study, where data of juvenile systemic sclerosis patients are collected prospectively with a standardized assessment and at the same time with the assessment of the quality of life from the patients
- The Aim of the Juvenile Scleroderma Inception Cohort is to learn more about the evolvement of organ involvement and quality of life in juvenile systemic sclerosis. The project should help to improve the care of these patients throughout the world
- The project should help to improve the care of these patients throughout the world
Further Information
You can contact us or read the protocol of the study
PROTOCOL Inceptions Cohort for juvenile systemic Sclerosis (jsSc) [PDF]
Update January 2026:
59 centers from 25 countries agreed to participate on the project. Until now 291 patients have been enrolled.
| Continent | States | Centers | Patients |
|---|---|---|---|
| Europe | Austria, Belgium, Czech Republic, Denmark, Germany, Italy, Latvia, Netherlands, Norway, Portugal, Romania, Russia, Serbia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK | 37 | 154 |
| North America | Canada, USA | 8 | 81 |
| South America | Argentine, Brazil, Paraguay | 8 | 35 |
| Asia | India, Israel, Palestine | 6 | 21 |
Development of the cohort until January 2026:
