The International Sjögren's community has officially changed the disease name Sjögren's Syndrome in favor of Sjögren's Disease to better indicate the serious and systemic nature of the disease. The term “secondary Sjögren’s” was also discarded. This formal adoption is approved by Sjögren’s clinicians, researchers, and patients around the world.
The Sjögren’s Foundation has been leading the charge to ensure that the words we use to describe Sjögren’s communicate that it is serious and systemic. This initiative was approved by the Foundation’s Board of Directors at the December 2015 Board of Director’s Meeting, and we have been actively working on this initiative since January 2016! We started by legally changing the name of our foundation to the “Sjögren’s Foundation” in late 2019 – no more “syndrome!”
In 2021, we published a Letter to the Editor in the American College of Rheumatology's official journal, Arthtitis and Rheumatology: Baer AN and Hammitt KM. Sjögren's Disease, Not Syndrome. Arthritis Rheumatol. 2021 Jul;73(7):1347-8. PMID: 33559389.
In 2022, the Foundation launched an international effort to change the name of our disease from “Sjögren’s syndrome” to “Sjögren’s disease” and to discard the term “secondary Sjögren’s.” This was equally a patient and clinician effort! An international task force was convened to guide the consensus process and in June 2022 we shared an article written by several Sjögren’s clinicians who supported the name change.
Between 2022 and 2024, there were surveys and discussions to finalize consensus, and we are proud to announce that we succeeded in this effort! A publication has been written about the process and name change and is currently being submitted to a peer reviewed publication. The publication is titled, “2024 International Rome Consensus on the Nomenclature of Sjögren's Disease,” is forthcoming. As soon as it is published, we will share it with the Sögren’s community!
Sjögren’s Disease is now the official name of the disease. The term “secondary Sjögren’s”, meant to label that a patient has Sjogren’s plus another autoimmune disease, has been discarded as it connoted that Sjögren’s was “less than” the other disease(s). Spread the word and help change the misconceptions about Sjögren’s. Language does matter!
Final Nomenclature Consensus to Rename Sjögren’s Syndrome to Sjögren’s Disease
Final nomenclature consensus was reached as follows:
- The term Sjögren’s Disease should replace Sjögren’s Syndrome.
- Sjögren’s without disease is an acceptable way to refer to the disease, especially once it’s been cited as Sjögren’s Disease.
- The acronym SjD should be used as an abbreviation for Sjögren’s Disease.
- The descriptor associated should be used in lieu of secondary for Sjögren’s Disease occurring in association with a second systemic autoimmune disease for which classification criteria are fulfilled.
- Sjögren Disease is the preferred terminology in clinical practice, without differentiation as to primary and associated forms. An appreciation of the common association of Sjögren’s with other systemic autoimmune diseases may have value in clinical evaluation of affected patients and in clinical decision-making.
- The differentiation between primary and associated Sjögren’s is recommended for scientific studies to define a homogeneous population.
- The choice of using the possessive or non-possessive form of Sjögren’s and spelling variants (o, oe, ö), should be left to the individual or journal preference.
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.