The international Sjögren’s community has officially changed the disease name Sjögren’s Syndrome to Sjögren’s Disease!
Sjögren’s disease is now the official name of the disease and the term “secondary Sjögren’s,” has been discarded as it connoted that Sjögren’s was “less than” the other disease(s).
The Sjögren’s Foundation is excited to announce that the international Sjögren’s community has officially changed the disease name from Sjögren’s syndrome to Sjögren’s disease to better indicate the serious and systemic nature of the disease. The term “secondary Sjögren’s” meant to label that a patient has Sjögren’s plus another autoimmune disease, was also discarded and will be replaced with “associated” to indicate the significance of both (or several) diseases in a patient’s overall health.
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, so we have been actively working on this initiative since January 2016!
We led the way by officially changing the name of the Sjögren’s Syndrome Foundation to the Sjögren’s Foundation in 2019.
In 2021, we published a Letter to the Editor in the American College of Rheumatology’s official journal, Arthritis and Rheumatology: Baer AN and Hammitt KM. Sjögren’s Disease, Not Syndrome. Arthritis Rheumatol. 2021 Jul;73(7):1347-8. PMID: 33559389.
In 2022, we continued our 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”. The international Sjögren’s community created a task force— comprised of patients, doctors, and clinician scientists— to guide the consensus process and create the survey process used by the Sjögren’s community about nomenclature.
The following quotes from Sjogren's patients illustrate the extent to which the serious nature of Sjogren's disease is minimized and patients' symptoms and concerns about their disease are dismissed.
Patient quotes on the use of “syndrome” provided in the surveys include:
- “Syndrome sounds much more benign than what I experience as a Sjögren’s patient.”
- “Syndrome signifies to most persons not familiar with our issues that it is not as important or as debilitating as a disease.”
- “When I say the words Sjögren’s syndrome, I always get “well, that’s not so bad, it’s just a syndrome, not a disease.”
- “As a physician with this disease, I agree that syndrome is misleading…We have learned enough to see this is obviously a disease, and a serious one at that.”
And on the use of “disease:”
- “Disease more accurately reflects the serious, debilitating, and devastating nature of this illness. Sjögren’s is already not taken seriously enough. Disease commands attention.”
- “Disease is a word with greater import.”
- “It’s a disease – with real health ramifications.”
Patients were very vocal about not using the term “secondary.” They cited that calling their disease “secondary” made it sound inconsequential. Samples of patient reactions to “secondary Sjögren’s” include:
- “This is not a contest to see which disease came first or which is more important. Sjögren’s should be serious enough to stand on its own.”
- “I have many autoimmune diseases. They aren’t secondary, so why is Sjögren’s?”
- “Why rank diseases at all? They are all significant parts of my healthcare picture.”
- “Secondary sounds like just an insignificant addition to another more important disorder.”
We are proud to announce that we succeeded in this effort! The task force has written an abstract proclaiming the nomenclature change and it is currently awaiting publication in a scientific journal. As soon as it is published, we will share the article entitled, “2024 International Rome Consensus on the Nomenclature of Sjögren's Disease” with the Sjögren’s community. Of note, consensus initiatives often are named for the location where the final consensus was reached— in this case, Rome, Italy— where the nomenclature initiative leadership held in-depth presentations and discussions on nomenclature at the 15th International Symposium on Sjögren's in 2022.
Conclusions on Nomenclature
Final 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”, replacing SS and SjS.
- 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.
Spread the word and help change the misconceptions about Sjögren’s. Language does matter!
Read the full history and process.
The international Sjögren’s community has officially changed the disease name Sjögren’s Syndrome to Sjögren’s Disease!
Sjögren’s disease is now the official name of the disease and the term “secondary Sjögren’s,” has been discarded as it connoted that Sjögren’s was “less than” the other disease(s).
The Sjögren’s Foundation is excited to announce that the international Sjögren’s community has officially changed the disease name from Sjögren’s syndrome to Sjögren’s disease to better indicate the serious and systemic nature of the disease. The term “secondary Sjögren’s” meant to label that a patient has Sjögren’s plus another autoimmune disease, was also discarded and will be replaced with “associated” to indicate the significance of both (or several) diseases in a patient’s overall health.
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, so we have been actively working on this initiative since January 2016!
We led the way by officially changing the name of the Sjögren’s Syndrome Foundation to the Sjögren’s Foundation in 2019.
In 2021, we published a Letter to the Editor in the American College of Rheumatology’s official journal, Arthritis and Rheumatology: Baer AN and Hammitt KM. Sjögren’s Disease, Not Syndrome. Arthritis Rheumatol. 2021 Jul;73(7):1347-8. PMID: 33559389.
In 2022, we continued our 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”. The international Sjögren’s community created a task force— comprised of patients, doctors, and clinician scientists— to guide the consensus process and create the survey process used by the Sjögren’s community about nomenclature.
The following quotes from Sjogren's patients illustrate the extent to which the serious nature of Sjogren's disease is minimized and patients' symptoms and concerns about their disease are dismissed.
Patient quotes on the use of “syndrome” provided in the surveys include:
And on the use of “disease:”
Patients were very vocal about not using the term “secondary.” They cited that calling their disease “secondary” made it sound inconsequential. Samples of patient reactions to “secondary Sjögren’s” include:
We are proud to announce that we succeeded in this effort! The task force has written an abstract proclaiming the nomenclature change and it is currently awaiting publication in a scientific journal. As soon as it is published, we will share the article entitled, “2024 International Rome Consensus on the Nomenclature of Sjögren's Disease” with the Sjögren’s community. Of note, consensus initiatives often are named for the location where the final consensus was reached— in this case, Rome, Italy— where the nomenclature initiative leadership held in-depth presentations and discussions on nomenclature at the 15th International Symposium on Sjögren's in 2022.
Conclusions on Nomenclature
Final consensus was reached as follows:
Spread the word and help change the misconceptions about Sjögren’s. Language does matter!
Read the full history and process.