Changing Sjögren’s Syndrome to Sjögren’s Disease is underway in the international medical and scientific community.
The discussions on nomenclature within the international community of clinicians and researchers began engendering change after the second Delphi process round. Read more about the multi-year process.
The final step in the formal process is to have the official publication of the name change published in a peer-reviewed scientific journal . Our publication, “2024 International Rome Consensus on the Nomenclature of Sjögren's Disease,” is forthcoming. Of note, consensus initiatives often are named for the location where final consensus was reached – in this case, Rome, Italy – where the 15th International Symposium on Sjögren’s was held in 2022 and nomenclature initiative leadership held in-depth presentations and discussions on nomenclature.
Examples of early adoption of Sjögren’s Disease
Adoption of the new name Sjögren’s Disease began by leading Sjögren’s Disease experts even before we began the Delphi process. These dedicated experts took on the responsabilty of using "disease", even before the Delphi process began. No that the Delphi process is complete, formal name change has begun. Here are examples:
- Sjögren’s experts began using the term ”Sjögren’s disease” in their work (including abstracts and peer presentations) as early as 2021.
- The April 2024 16th International Sjögren’s Disease Symposium (ISSjD) used “disease” in place of “syndrome” for the first time
- The ISSjD Chair requested that all presenters use “disease” and not “syndrome”
- Recently published medical and scientific journal articles show a major surge in use of “Sjögren’s disease”
- The Sjögren’s Foundation collaboration with the Foundation for the National Institutes of Health (FNIH) led to FNIH using “Sjögren’s disease” for all of its scientific research programs (AMP®AIM and Biomarkers Consortium)
- The clinician tool for accessing the most recent information on disease, UpToDate, is now using “Sjögren’s disease”
- Two National Institutes of Health (NIH), NIDCR and NIAMS, have switched to “Sjögren’s disease”
- The American College of Rheumatology (ACR) had adopted “Sjögren’s disease”
- EPIC, a major Electronic Health Records System, has adopted “Sjögren’s disease”
Next Steps
Once our manuscript is published, the Sjögren’s Foundation will use this as an official documentation of acceptance of the new nomenclature and continue advocating for change with:
- All of NIH and federal agencies
- Other professional and medical societies
- Major medical hospitals and universities
- Medical news entities
- World Health Organization (WHO)
We also are always on the lookout for antiquated terminology that does not convey the latest views of patients and clinicians through the new nomenclature! Language matters! As we educate more and more healthcare providers about Sjögren’s, the language we use matters. It can be the difference between a physician learning that Sjögren’s is systemic and serious, or incorrectly thinking that Sjögren’s is just a dry eye and dry mouth disease that is less serious than other autoimmune diseases. Sjögren’s is serious, systemic and prevalent!
Sjögren’s Disease Name Change History
Read the full history of the name change and how we helped bring the international Sjögren’s medical, research and patient community together.