Information

  • 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 March 2021:

  • 46 centers from 24 countries agreed to participate on the project. Until now 187 patients have been enrolled.
Continent States Centers Patients
Europe Austria, Belgium, Czech Republic, Denmark, Germany, Italy, Latvia, Netherlands, Norway, Portugal, Russia, Serbia, Slovenia, Spain, Sweden, Switzerland, Turkey, UK 27 104
North America Canada, USA 8 47
South America Argentine, Brazil 6 23
Asia India, Israel 5 13


Development of the cohort:

Patients
Visit number
Patients Distribution
Center Dirtribution