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The community needs to cooperate around a common clinical dataset in order to understand rare disease complications in which individual centers cannot obtain enough data and associated clinical samples on their own.

The goals of this are:

  • To develop a large national clinical database
  • To identify biomarkers of disease with an associated strong clinical database

What are the advantages of SCaR?

  • Offers access to a clinical data repository that was designed by leaders in the field
  • Utilizes an online clinical data collection that is professionally managed
  • Offers seamless coordination across groups
  • Allows for true national collaborative group
  • Allows inclusion of new clinical data source documents

What will be collected?

  • Demographics
  • Physical exam and laboratory data
  • Patient Reported Outcomes
  • Clinical samples: ¬†Skin biopsy and serum

Who can be enrolled?

  • Early Diffuse SSc patients
  • Limited SSc patients with and without PAH
  • Patients with ILD
  • Other groups?

How can I support my coordinator in order to participate?

  • Through a subcontract, the BU CORT will support data and sample collection, focusing on early diffuse patients.

Nuts and Bolts

  • All participating investigators will be included as co-author on publications
  • Sites will be provided skin biopsy kits, tubes for biopsies and FEDEX mailers
  • Investigators with sites enrolling 5 or more patients will be provided with iPADs for waiting room use by patients for PROs

For more information or to join the SCaR investigators, please contact Eric Stratton