A new study, partly funded by the Lupus Foundation of America, identified 39 candidate measures for an updated tool to better assess long-term organ damage in people with systemic lupus erythematosus (SLE). The proposed update would revise the Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI) to better reflect current clinical practice.  

The study included 146 health professionals and people with lupus from 35 countries who participated in a multi-round consensus process, alongside a review of existing research. Through this process, researchers narrowed 226 candidate measures to 39. The proposed revision removes or incorporates 11 measures from the original index, including proteinuria and cranial neuropathy, and adds new measures such as growth failure or reduced final height and adrenal insufficiency. It also introduces severity-based subcategories for 17 measures, which could allow for a more detailed assessment of organ damage.

The proposed revised index is not yet finalized. Next steps include determining how each measure should be weighted and scored and evaluating the updated index for validity, reliability and responsiveness, with the goal of creating a more clinically relevant tool for future lupus research and clinical trials. Learn more about improving the accuracy of the current lupus organ damage score index.

Read the study