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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
