Help Us Show the Full Picture of Living with Sjögren’s: Take the Living with Sjögren’s Patient Survey

The Sjögren’s Foundation is committed to bringing patients, healthcare professionals, and researchers together to better understand and conquer the complexities of Sjögren’s disease. 

We’ve launched a new national Living with Sjögren’s Patient Survey, a follow-up to our 2021 survey, to reflect what daily life with this disease truly looks like today. 

Sjögren’s affects everyone differently, and we need as many perspectives as possible to create a complete picture of the disease. 

Developed in partnership with The Harris Poll and a volunteer committee of patients, clinicians, and researchers, the purpose of the study is to: 

To provide researchers with valuable data on the wide range and severity of symptoms experienced by individuals living with Sjögren’s. So, they will begin looking at researching unmet needs.
To raise greater awareness across the broader Sjögren’s community, including patients, caregivers, and healthcare providers. 
To educate U.S. Congress, regulatory agencies and pharmaceutical companies about the urgent need for new research and systemic therapeutics for Sjögren’s disease. 
To gain deeper insight into the lived experiences of Sjögren’s patients and better understand how the disease impacts daily life.

Please know that all responses are confidential. We’ll only share overall results, not individual answers.

The survey takes about 20 - 25 minutes and will remain open through September 4, 2025. 

 Click here to take the Living with Sjögren’s Patient Survey

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.   

If you are not a patient or have taken the survey, please consider sharing this flyer with others to encourage them to take the survey. 

Thanks to the support of our Members and donors, this initiative will help ensure the full reality of living with Sjögren’s is seen, understood, and used to inform future research, education, and care.

Frequently Asked Questions (FAQs)

Who should fill out this 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.
Men and women of every age are needed!
Whether you’re newly diagnosed or have been living with Sjögren’s for years, every experience matters and contributes to a more accurate picture of what it means to live with this disease.
We recognize that many individuals have not yet received a formal diagnosis from a medical professional, and we understand how long, challenging, and frustrating the journey to diagnosis can be. While this survey is limited to those who have been medically diagnosed, we want to acknowledge and validate the difficult path many face in seeking answers.

Why can’t non-U.S. residents participate?

At this time, the survey is designed to collect data that aligns with U.S. healthcare systems and regulatory standards. We recognize the importance of global perspectives and are exploring future efforts to include international patient voices.

Is my personal information safe?

Yes. All responses are confidential. No individual data will be shared, and results will only be reported in aggregate.

Will my name or identity be shared?

No. The survey does not collect identifying information unless you choose to provide it for optional follow-up or additional sharing opportunities.

Why are you asking for demographics?

These details help us better understand how different communities experience Sjögren’s. This insight helps inform our outreach, advocacy, and education efforts.

Why is the Foundation conducting this survey?

We’re collecting insights directly from people living with Sjögren’s disease to better understand the day-to-day challenges, needs, and priorities of our community. The purpose of the study is to:
To gain deeper insight into the lived experiences of Sjögren’s patients and better understand how the disease impacts daily life.
To provide researchers with valuable data on the wide range and severity of symptoms experienced by individuals living with Sjögren’s.
To highlight areas of Sjögren’s that need greater research to better understand the disease, improve diagnostic methods, and advance treatment options.
To raise greater awareness across the broader Sjögren’s community, including patients, caregivers, and healthcare providers.
To educate regulatory agencies and pharmaceutical companies about the urgent need for new and systemic therapeutics for Sjögren’s disease.
The Foundation publishes articles for healthcare specialties based on the data so we can demonstrate the systemic nature of the disease, yet give a deeper dive into a specialty area (such as neurologists or pulmonologists). To help healthcare providers better understand the disease as a whole and specifically within their specialty.
From the 2021 data, we were able to show that patients experiencing neurological complications reported a significantly greater impact on their quality of life. Similarly, individuals who had undergone more extensive dental work also reported lower quality of life scores.
By sharing these findings, we help healthcare professionals better understand both the full-body impact of Sjögren’s and how it presents within their area of practice, ultimately improving patient care across specialties.
Sjögren’s affects everyone differently. This survey helps capture the full spectrum of how it shows up in daily life. No two people experience Sjögren’s the same way. That’s why it’s so important we hear from as many people as possible, to reflect the full picture of this disease.

How will the results be used?

The data collected will be analyzed and compiled into a published report by the Sjögren’s Foundation. This report will be shared publicly and used in meetings with researchers, healthcare professionals, pharmaceutical companies, and policy leaders. We’ll also integrate the findings into our ongoing awareness efforts, including website content, educational materials, and advocacy campaigns, to ensure the lived experiences of patients are reflected in everything we do. In some cases, we may highlight key findings in media outreach or presentations to help amplify the patient voice. Results are expected to be shared with the public by early to mid-2026.