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. 

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. 

Feasibility Testing
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.

Support Groups
For many people with scleroderma, peer-led support groups are an important way to obtain disease-specific education and emotional and practical support. SPIN has partnered with patient organizations and patient support group leaders on the SPIN-SSLED Advisory Team to create the SPIN-Scleroderma Support group Leader EDucation (SSLED) Program, will provide training to scleroderma support group leaders and others who would like to become a group leader in order to improve the effectiveness and sustainability of existing scleroderma support groups, reduce burden on support group leaders, and increase the availability of support groups. The SPIN-SSLED Program is currently being tested via clinical trial. Click here to learn more. 

Exercise
SPIN researchers are collaborating with the SPIN-PACE Advisory Team to adapt the Active Living Every Day (ALED) program, an evidence-based program to support physical activity, for people with scleroderma. As a first step, SPIN conducted a series of focus groups to better understand barriers and facilitators to physical activity that are specific to scleroderma. Using this information, SPIN investigators designed a survey that was administered to participants in the SPIN Cohort to obtain information on the frequency and importance of different barriers and the likelihood that patients would use possible solutions. This information will then be used to adapt the ALED intervention for SPIN-PACE so that it meets the needs of people with scleroderma.

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. The SPIN-CARE project focuses on understanding challenges faced by informal caregivers of people with scleroderma, and their preferences for types of support services. Our long-term goal is to develop interventions to increase overall quality of life for scleroderma caregivers. The SPIN Caregiver Advisory Team is comprised of informal caregivers of people living with scleroderma. This team has collaborated with researchers to create an online survey on the experiences and support needs of scleroderma caregivers. With this information, we will develop resources that are tailored to meet the needs of scleroderma caregivers.  

Patient decision aids are tools (pamphlets, video, or web-based) that help patients understand the potential positive and negative effects of a medical decision. They are increasingly used in health care to support patients in making health decisions consistent with their values and preferences, but they are virtually non-existent in rare diseases. SPIN investigators are working with the SPIN Decision Aids Advisory Team to assess patient and physician priorities for difficult healthcare decisions in scleroderma, which will guide the development of decision aids.

Despite being a high-priority area for patients and clinicians, there is very little scleroderma-specific information about nutrition and diet. To fill this gap, SPIN is conducting online focus groups on how patients find information about nutrition and diet, as well as preferred delivery methods for evidence-based information on those topics. This information will be used to develop a survey, which will be administered via the SPIN Cohort.

Impaired oral and dental health is a potentially major, yet understudied, source of disability in people with scleroderma. The SPIN team is working with patient partners to develop a model of oral quality of life in SSc. Preliminary data collection via the SPIN Cohort will focus on patient experiences with mouth functional impairment, challenges with hygiene activities, psychological issues related to mouth appearance, access to dental care, and mouth-related symptoms.