The Scleroderma Patient-centered Intervention Network (SPIN) is an international research network of clinicians, scleroderma researchers, and people with scleroderma, who work together to help people with scleroderma cope better with their disease and improve their day to day life. Since 2011, SPIN has been conducting research to identify challenges people with scleroderma face in managing their disease and developing ways to address these challenges through supportive, freely available programs. Almost 1500 people with scleroderma from 7 countries participate in SPIN research, including Australia!

Right now, SPIN is working on a number of projects to improve our understanding of scleroderma and ways to tackle common challenges. These include pain, itch, self-management of common problems in scleroderma, understanding scleroderma research, and more! 

The SPIN-Pain project aims to map the experience of pain in scleroderma, in the hopes of opening the doors to investigations of treatments for different sources of pain, and reducing pain for people living with the disease. SPIN researchers worked together with a team of 7 patient partners to develop a survey tool to map the important sources of pain for people with scleroderma, the nature of that pain – such as how constant or episodic it is and when it occurs, and how people attempt to manage their pain. We received feedback from other people living with scleroderma, as well as healthcare providers who care for people with scleroderma, and have refined the tool based on this feedback. We will soon be administering the final version to people from Canada and 4 other countries who participate in SPIN research.

The SPIN-Itch project is the first large-scale study to describe the experience of itch in scleroderma. This project is still in the planning stage. Over the next few months we will work with clinicians and people with scleroderma to adapt a questionnaire that explores itch in various skin conditions to be specific to scleroderma, get feedback from people living with scleroderma who have itch to ensure it includes their experiences, and then deliver the final tool to SPIN participants. The findings will help improve our understanding of itch in scleroderma and how to best treat it.

The SPIN-SELF program is a self-management program designed to help people with scleroderma improve their day to day life and confidence in managing scleroderma symptoms. The program consists of 9 modules, each explains various self-management techniques and demonstrates how to use them to address common challenges in scleroderma. It is the first self-management program designed specifically for people with a rare disease. We launched the study in October 2023 and we are still recruiting participants. To see if you are eligible to take part in the SPIN-SELF Program and study, please email us at spinself@gmail.com.

The SPIN Communicating Latest Evidence and Results (SPIN-CLEAR) Trials aim to improve how well the results of scleroderma research are communicated to patients and the community. Often, research results are not communicated in an understandable way, or at all, to patients. We will ask people with scleroderma to assess, at random, different research communication tools, such as infographics, videos, comics, plain language summaries, for information completeness, understandability, and ease of use. This will help to determine how best to communicate results of research to participants and the scleroderma community. We will start recruiting people for this study later this year. 

If you would like more information about SPIN, our research, or how to participate in our projects, check out our website at www.spinsclero.com and our Facebook page at www.facebook.com/spinsclero