The SPIN Cohort:
A cohort is a large group of people who share a set of similar characteristics or experiences (in this case, living with scleroderma), and who participate in a research study or studies at the same time. The SPIN team has recruited an international cohort of people with scleroderma who fill out online measures every three months and are eligible to participate in SPIN’s observational studies and clinical trials. Click here for more information on the SPIN Cohort.
SPIN collects large amounts of data from the cohort to better understand the prevalence, severity, and progression of common problems in scleroderma, including areas like hand function, pain, fatigue, appearance concerns, and overall quality of life. We call these “observational studies” because they do not involve an intervention or treatment. SPIN also uses the cohort to test whether certain questionnaires are suitable for use in people with scleroderma, and to build evidence to inform the development of SPIN toolkits.
Many people with scleroderma face daily challenges, such as chronic fatigue, reduced hand function, visible appearance changes, and other symptoms that make it difficult to manage daily tasks and activities. The supportive programs or “toolkits” currently being developed by SPIN aim to address these problems. These programs are psychosocial, because they help boost emotional well-being and nurture social ties. Their other aim is rehabilitation, as they help individuals manage symptoms and balance daily activities. In short, the purpose of SPIN’s toolkits is to improve the daily life for people living with the disease. Many programs of this type already exist. They are the result of extensive research and practice in medicine, psychology, occupational therapy and other disciplines. SPIN toolkits are largely based on already existing information and research, but with two major differences. First, they are tailored specifically for people with scleroderma. Second, all toolkits are Internet-based, which increases accessibility for patients who live far from treatment centres, have mobility issues, or other barriers to treatment. All SPIN toolkits are interactive, easy-to-use, and include tips that are easy to implement in real life.
SPIN conducts feasibility testing for each of its toolkits. This involves reviewing the process of implementing each toolkit, required resources (including time and budget), management issues (personnel and data systems), and various scientific aspects of evaluating each toolkit. Importantly, feasibility testing will assess how straightforward and engaging the toolkits are for people with scleroderma by conducting interviews with randomly selected study participants. Based on the information obtained from feasibility testing, SPIN toolkits are modified to better suit the needs of patients.
Randomized Controlled Trials (RCTs):
An important consideration for any support program is whether it reaches its goals. For SPIN, this means asking whether the program actually helps people with scleroderma cope with the challenges posed by their illness. For instance, if a program is designed to help an individual feel less sad or anxious, how can we tell if the participation in the program does actually reduce sadness or anxiety? A Randomized Controlled Trial (RCT) is a type of scientific study specifically designed to answer questions like these. In an RCT, participants are randomly assigned into two different groups – the group that receives the program and the group that does not. The two groups are then compared on a characteristic of interest (for example, sadness and anxiety). SPIN conducts RCTs to determine whether its toolkits work for people with scleroderma. Eligible cohort participants may be invited to participate in one of the RCTs currently being conducted by SPIN.
Dissemination of Programs:
Once each SPIN toolkit has been fully developed and tested, they will be available free-of-charge to the public. SPIN’s partner scleroderma patient organizations around the world will lead the dissemination of SPIN toolkits via their websites and social media.
Many people living with scleroderma attend support groups to cope with their illness. Support groups offer a safe and comfortable environment where people facing a similar challenge can come together to give and receive support. This kind of exchange can offer many personal and practical benefits, such as learning how others have dealt with issues related to scleroderma or learning more about current scleroderma research. Leaders of scleroderma support groups play an especially important role as they are in charge of the many tasks that go into running a successful support group meeting from coordinating administrative details to facilitating a meaningful group discussion.
The Scleroderma Support Group Team is comprised of researchers, members of Scleroderma Canada and the Scleroderma Foundation in the United States, and patient support group leaders. This team has come together to create the SPIN-Scleroderma Support group Leader EDucation (SSLED) Program. The goal of this 3-month training program is to provide 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 for all those who attend.
Many people living with scleroderma are supported by a family member or a friend. Informal caregivers are family members or friends who provide unpaid care for a loved one with a health condition. This project focuses on better understanding challenges faced by informal caregivers of people living with scleroderma, and their preferences for types of support services that could potentially be developed. Our long-term goal is to develop interventions aimed at increasing overall quality of life for informal caregivers of those living with scleroderma.
The Scleroderma Caregiver Project Team is comprised of researchers and informal caregivers of people living with scleroderma. This team has collaborated to create an online survey to obtain information about the experience of informal caregivers of people with scleroderma. With this information, our goal is to develop resources that are tailored to meet the needs of caregivers of people with scleroderma.