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EUSTAR Database

The cornerstone of EUSTAR’s research efforts is our bespoke multi-center database, which currently includes detailed data from over 23,000 scleroderma patients across the globe. This invaluable resource is made possible through the dedication of our exceptional EUSTAR centers, who contribute comprehensive patient data annually.

Database Content

Data from each annually scheduled patient medical visit is recorded, capturing demographic data and a wide range of disease-specific information. Our longitudinal dataset includes:

  • Disease subsets
  • Autoantibodies
  • Clinical signs and symptoms
  • Disease duration
  • Organ involvement
  • Laboratory results
  • Diagnostic test outcomes
  • Patient-reported outcome measures

Use of the Database

EUSTAR centers can apply for access to anonymized datasets from our database for specific clinical research projects. This data is crucial for advancing our understanding and treatment of scleroderma. For more details, visit our Clinical Projects page.

Database Provider

Our database is securely hosted on the Medidata Rave EDC (Electronic Data Capture) platform. The EUSTAR team continually enhances the database to improve usability and functionality, ensuring high-quality, complete data for our research initiatives.

Medidata Login

Database (Member Area)

EUSTAR members can access the Database – Member Area page, containing a variety of support resources designed to assist with database use, including:

  • Database User Manual
  • PDF copy of the database (eCRF)
  • Access to Centre Exports

These tools ensure that all users can effectively contribute to and utilise the EUSTAR database, fostering collaborative research and improving outcomes for scleroderma patients worldwide.

Access the Database Member Area Page