Help with scleroderma research by joining a SPIN Patient Advisory Team!

by Claire Fedoruk | Sep 25, 2019

SPIN periodically seeks individuals with scleroderma to help with our new research projects. Please read the information below to learn more. If you think you might be interested and able to commit the time, click on the link at the bottom of the page that will direct you to an application form where you can provide some brief information about yourself.

What is SPIN?
The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of people living with scleroderma, healthcare professionals, and researchers who are working to improve quality of life for people with scleroderma. Together, we do research to better understand the kind of problems people with scleroderma face. We use this information to develop online programs to support people with scleroderma in different areas like pain, fatigue, sleep problems, appearance changes, and coping with difficult emotions. Many of these SPIN programs are currently in development or are being tested via clinical trials. Now, SPIN is starting preliminary research on several new topics, with the long-term goal of developing support programs in these areas.

What would joining a Patient Advisory Team involve?
SPIN’s patient advisors contribute different amounts of time, depending on their availabilities, but rarely more than 3-6 hours per month. Some of the tasks they help with include (but are not limited to):

  • Meeting with other members of the research team via videoconference to discuss aspects of a project and give input

  • Reading over study protocols (procedures) and giving feedback

  • Helping with the development of surveys and questionnaires

  • Helping draft letters to support grant applications

  • In later stages of a project, reviewing and giving feedback on the content of online programs for people with scleroderma


Am I eligible?

To be eligible, individuals must:

  • Have received a diagnosis of scleroderma (systemic sclerosis) from a qualified health care professional

  • Be over 18 years of age

  • Have regular access to Internet and email

  • No previous research experience is required!

 

Click here to access the application form.