SCaR is designed to be a long-term international combined clinical database and biosample collection to serve as a resource for participating investigators. It will be adaptable to meet the needs of individual investigators and seek to support studies and associated grant applications by members.
The goals of this are:
- To develop a large international 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
