The Scleroderma Patient-centered Intervention Network (SPIN)
WHAT IS SPIN?
The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of researchers, health care providers, and people living with scleroderma from around the world.
SPIN’s mission is to work with people with scleroderma to identify their needs and prioritize research in areas most important to them, and to develop, test and disseminate accessible patient programs that improve quality of life and empower people with scleroderma and their loved ones.
Areas targeted by SPIN’s programs include managing symptoms, daily tasks, emotions and changing relationships related to illness, as well as balancing activity and rest.
SPIN is led by Dr. Brett Thombs from the Jewish General Hospital and McGill University in Montreal, Canada. The network is working closely with scleroderma experts at over 45 clinical sites around the world and scleroderma patient organizations, including Scleroderma Canada, Sclérodermie Québec, the Scleroderma Association of British Columbia, Scleroderma Alberta, the Scleroderma Association of Saskatchewan, Scleroderma Manitoba, the Scleroderma Society of Ontario, the Scleroderma Society of Nova Scotia, the US Scleroderma Foundation, the Federation of European Scleroderma Associations (FESCA), the Dutch patient organization for systemic autoimmune diseases (NVLE), Scleroderma Australia, Scleroderma New Zealand, Scleroderma & Raynaud’s UK (SRUK), Project Scleroderma, the Spanish Scleroderma Association, and the French Scleroderma Association (ASF).
The SPIN team consists of professionals with a wide variety of backgrounds, patient advocates, trainees, and support staff. For more information about these individuals, please click here.
Dr. Thombs and his team focus on developing strategies to improve quality of life and reduce disability among people living with scleroderma. He is the Founder and Director of the Scleroderma Patient-centered Intervention Network (SPIN), a patient-researcher collaboration that maintains an ongoing cohort of > 2,000 patients from over 40 sites in 7 countries and conducts trials of patient-centered tools to support coping with scleroderma. Among his over 250 peer-reviewed publications, Dr. Thombs has authored > 80 on patient experiences and outcomes in scleroderma. He has been PI on over $3.5 million in funding for patient-oriented research in scleroderma.
Dr. Brett Thombs
Director of SPIN
Dr. Linda Kwakkenbos
Co-Director of SPIN
Dr. Linda Kwakkenbos is the Co-Director of the Scleroderma Patient-centered Intervention Network (SPIN). After completion of her PhD in Social Science at Radboud University, the Netherlands, in the summer of 2012, Dr. Kwakkenbos started working with Dr. Brett Thombs at McGill University. She initially coordinated the SPIN project, and was later named Co-Director. Linda manages the project on a day-to-day basis with Dr. Brett Thombs and Marie-Eve Carrier. Dr. Kwakkenbos is currently a Lecturer and Researcher at the Behavioural Science Institute of Radboud University. She teaches in a number of courses in the Psychology Bachelor and Master programs, including research, communication and diagnostic skills trainings. Dr. Kwakkenbos’ research focuses on the development and testing of patient-reported outcome measures, novel research methodologies, and the development of interventions that help contribute to better disease management in chronic diseases, focusing on rare diseases.
To support her work in SPIN, Linda received a Post-doctoral Fellowship from the Fonds de la Recherche en Santé Québec (FRSQ; 2013-2015) and was awarded the prestigious Banting Postdoctoral Fellowship from the Canadian Institutes of Health Research (CIHR; 2015-2017).
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.