New Consensus Redefines Nomenclature for Sjögren Syndrome
A multidisciplinary and patient-inclusive consensus process has led to the official renaming of Sjögren syndrome as “Sjögren disease (SjD)”, reflecting a more accurate understanding of its pathogenesis and addressing concerns around stigmatizing or unclear terminology.
The initiative, conducted through bibliometric analysis, systematic literature review, and a Delphi consensus process, involved equal representation from clinicians and patient advocates. The updated terminology responds to longstanding dissatisfaction with the term "syndrome," which many patients perceived as diminishing the seriousness of the condition.
“The term 'Sjögren disease' should replace 'Sjögren syndrome',” the authors stated. The new terminology aims to highlight SjD as a distinct systemic autoimmune disease rather than a loosely defined symptom complex.
Five key recommendations were issued:
- Replace “Sjögren syndrome” with “Sjögren disease”.
- Adopt “SjD” as the standard abbreviation.
- Use the term “associated” instead of “secondary” when SjD occurs alongside another autoimmune disease.
- In clinical practice, avoid differentiating between “primary” and “associated” forms.
- Retain differentiation between primary and associated SjD in scientific studies only, for the purpose of population definition.
“Sjögren disease is the preferred terminology in common parlance and in clinical diagnosis,” the authors noted. Importantly, this shift also moves away from the hierarchical implication of “primary” and “secondary,” acknowledging the complex interplay among overlapping autoimmune diseases.
For rheumatologists, the endorsement of “Sjögren disease” clarifies diagnostic language, aligns terminology with patient perspectives, and enhances communication in both clinical and research settings. The consensus represents a unified step toward greater precision and recognition of this often misunderstood autoimmune condition.
Reference
Ramos-Casals M, Baer AN, Brito-Zerón MDP, et al. 2023 international rome consensus for the nomenclature of sjögren disease. Nat Rev Rheumatol. 2025;21(7):426-437. doi:10.1038/s41584-025-01268-z
