1.
Who can answer this survey?
If you have been diagnosed with Systemic Sclerosis, also known as Scleroderma, you may be interested to participate in this survey. Your participation in this survey is voluntary.
What is the purpose of this survey?
This study is an European Study that results from a Canadian Study. Its main purpose is to determine issues that are important for individuals like you living with Scleroderma. It includes questions about symptoms that people with scleroderma might experience, as well as psychological, social, employment, and financial issues. It also asks about your ability to obtain appropriate healthcare. This is your opportunity to help focus our research into areas that you have identified as important to you.
Will my answers be kept anonymous and confidential?
DO NOT WRITE YOUR NAME ON THIS SURVEY; it is anonymous. The answers you give will be kept confidential. The demographic section of the questionnaire will be used only to describe the people completing this survey; the information will not be used to find out your name.
Do I have to answer every question?
It is important to carefully read and answer every question to ensure that we get the best understanding of your experience with scleroderma. Although some questions may be difficult to answer, please respond to the best of your ability and base your answers on your own experiences.
If you have any questions about this survey, you can contact Catarina Leite: associacao.apde@gmail.com; 00351-919104448
Thank you very much for your help.