Current Research Projects
The SPIN Cohort
The SPIN Cohort is a group of people with scleroderma from around the world who participate in SPIN’s online studies. Cohort participants are recruited by rheumatologists and other scleroderma healthcare providers from over 40 clinical sites in 7 countries. Through the cohort, SPIN collects information about important challenges to people with scleroderma and their support needs. Some cohort participants are also invited to test SPIN's online support programs for scleroderma before releasing them to the public.
Click here to learn more about the cohort: www.spinsclero.com/cohort
New SPIN Training Program for Scleroderma Support Group Leaders
For many people with scleroderma, support groups offer a safe and comfortable environment where people can exchange support and learn how others have dealt with scleroderma-related issues. The leaders of support groups play an especially important role, since they are in charge of the many tasks that go into running a successful meeting, from coordinating logistics to facilitating meaningful discussion.
However, running a support group is no easy task: many leaders feel overburdened by their role, and some even have to disband their groups due to this. Furthermore, support groups are not always available, depending on where you live.
To help support these leaders and encourage new leaders to form their own support groups, the Scleroderma Patient-centered Intervention Network (SPIN) has created the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. This training program, which is delivered by videoconference, provides leaders with information and resources to help them feel more comfortable, confident and supported in their roles, and in turn, contribute to a more positive support group experience. Ultimately, the goal is to make support groups more widely available to people with scleroderma in Québec, the rest of Canada, the USA, and internationally.
The SPIN-SSLED Program takes place over 13 weeks (roughly 3 months). Participants meet each week over online videoconference for 60-90 minute sessions led by a trained facilitator. Each week, participants are guided through a different module that tackles one aspect of leading a support group, such as structuring a group meeting, recruiting new members, fostering a positive group culture, supporting yourself as a leader, and many other topics. At the end of 13 weeks, participants are provided with a certificate attesting that they have successfully completed the program.
The SPIN-SSLED Program also offers a number of supplementary resources, including:
1. A workbook that summarizes all modules.
2. An online forum where participants can discuss what they’ve learned with other participants.
3. Educational videos that illustrate challenging scenarios that support group leaders often encounter.
4. An Online Resource Center with educational videos on various scleroderma topics and support group activity ideas.
SPIN researchers are conducting a clinical trial to evaluate the SPIN-SSLED Program. If shown to be effective, the SPIN-SSLED Program will allow support group leaders to be certified by Sclérodermie Québec, Scleroderma Canada or the Scleroderma Foundation in the US.
Click here to learn more about the SPIN-SSLED Program: www.spinsclero.com/projects/ssled