FESCA

Scleroderma Patient-centered Intervention Network (SPIN)

The Scleroderma Patient-centered Intervention Network (SPIN) is a collaboration of patient organizations, clinicians, and researchers working to improve quality of life for those who have scleroderma. The SPIN project objective is to leverage technology to develop and test a set of easily accessible, low-cost interventions to improve daily life, focusing on hand function, symptoms of depression, body image distress, and general self-management.

Investigators and clinicians from key scleroderma (SSc) centers in Canada, the US, and Europe, as well as representatives of the Scleroderma Society of Ontario, Sclérodermie Québec, the US Scleroderma Foundation, and the Federation of European Scleroderma Associations (FESCA) are grouped under the leadership of a Canadian team of doctors.
At the first organisational meetings, patient partners and investigators worked together to prioritize a set of unmet needs important to people living with SSc and potentially amenable to supportive care interventions. Following this, SPIN investigative teams began work to design feasibly delivered interventions to improve hand function, reduce symptoms of depression, address body image concerns related to disfigurement, as well as to implement a general program for self-management geared to the needs of SSc patients.

FESCA, along with major patient organizations in Canada and the US, has committed
to work with SPIN to disseminate the results of the proposed work, as well as to work
together to make SPIN’s interventions accessible to patients.