SPIN (Scleroderma Patient-centered Intervention Network)
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.
A medical research project about standards of care for those with scleroderma, under EUSTAR doctors. FESCA is included as a partner for this proposal and will participate in discussions, and disseminate the results, as per budget. To learn more about DESSCIPHER, please go to the official website here.
The development of a SSc network for HPs in Europe. The EULAR-HP group has asked FESCA to partner with them in this development to increase what health professionals can do for those with SSc. The EUSHNET project is a EULAR international collaborative network of European Health Professionals in Systemic Sclerosis.
The EUSHNet network exists to improve non-pharmacological care and rehabilitation and reduce inequity in different countries through an international network of health professionals working with patients with Scleroderma/Systemic Sclerosis (SSc). The network is antended to complement the work of the patient organization FESCA and the existing EUSTAR medical network. The EUSHNet activities will focus on physical, psychosocial and educational therapies, along with the associated need and impact of the patients. The overall aims of EUSHNet are:
To improve expertise of HPs through support for knowledge generation and education
To facilitate communication between HPs to achieve clearly defined standards of non-pharmacological care and rehabilitation in SSc
To establish evidence based standards of care and of rehabilitation in SSc
EUSHNet is backed by EULAR and the strength of the EUSHnet network lies in the coordinated activity of small numbers of HP- practitioners in large numbers of EU member states. Therefore, the EUSHNet Network consists of a steering committee and a network of national champions who will engage with and coordinate HP clinicians in their own countries in the conduct of the activities of EUSHNet. The national champions are the “heart” of the proposed programme of work. They will be in contact with other HPs from varying clinical backgrounds and receive, evaluate and cascade suggestions to HPs in their own geographical region or country. WSF, the World Scleroderma Foundation
This new foundation, based in Switzerland, with Paul Klee as its patron, has a prestigious worldwide Board, and FESCA’s president is the patient representative on the Board. The foundation pulls all funding for SSc research together. Social Economic Burden and Health-Related Quality of Life of Patients with Scleroderma in Europe (BURQOL-RD)
BURQOL-RD Project is a 3-year-project that addresses crucial questions for the rare diseases community. It goes beyond any previously implemented surveys by also considering the ‘overall cost’ (direct and indirect) of caregivers, who dedicate their time and energy to look after patients. In this way, BURQOL-RD will generate a complex and reliable estimate of the social economic burden and health-related quality of life of patients with rare diseases and their caregivers in Europe. Scleroderma is among the set of ten rare diseases that are investigated by BURQOL-RD study. More information here