As you know, the Sjögren’s Foundation is committed to creating a community where patients, healthcare professionals, and researchers come together to conquer the complexities of Sjögren’s.
Thanks to the support of our members and donors, the Foundation has been able to develop a new comprehensive Living with Sjögren’s patient survey, which many of you may remember from 2016.
Click Here to View 2016 Living with Sjögren's Survey Results
The objective of this survey is to gain insight and to better understand the experiences of Sjögren’s patients, including the wide range of symptoms and their impact on your lives.
This survey, designed in collaboration with The Harris Poll and a volunteer committee with a range of expertise in the disease, will help the Foundation:
- Provide researchers with valuable information about the variety and severity of what Sjögren’s patients experience
- Create greater awareness in the Sjögren’s community at-large
- Educate regulatory agencies and pharmaceutical companies about the need for new and systemic therapeutics for Sjögren’s
We are asking you today to please consider taking part in this study to help us address these important needs.
If you choose to take part in this research, please be assured that your answers are completely confidential and that the results of this study will be a reflection of the group as a whole, so no individual would be identifiable from the results.
Please note, Sjögren’s Foundation members should have received a single-use link via email between October 13 and 14. If you are not a Sjögren’s Foundation member and would like to participate, please use the link provided below and please provide answers based on your own personal experience.
The survey will take approximately 20 minutes and will remain open until November 5, 2021. The link provided on this webpage can be shared with others. We have also included answers to a few questions based on early feedback should you experience something similar, provided below.
Thank you in advance for your participation and for using this opportunity to help impact Sjögren’s by making your voice heard! Your participation in this Living with Sjögren’s patient survey is critical to our success.
Am I eligible to take the survey?
This survey was designed and approved for adults age 18 years or older, living in the United States and who have been diagnosed with Sjögren’s by a medical professional.
My link doesn’t work when I click on it, what should I do?
If you are a Sjögren’s Foundation member and the link you received via email does not work when clicking on it, you can copy and paste the URL into your browser’s search bar and you should then be directed to your survey.
How should numbers be entered?
There are a few questions that require respondents to enter a whole number, for these:
- Do not use any punctuation (e.g., write 4000 and not $4,000)
- The range of the numbers for questions on cost is 0 – 10000
- If your expenses are more than 10000 for a given category, please enter 10000.