New research is advancing efforts to improve how doctors measure long-term organ damage in people living with systemic lupus erythematosus (SLE).

Researchers are working to modernize the SLICC/ACR Damage Index, a long-standing tool used to assess permanent damage that can develop over time as a result of lupus, its complications or treatment.

As part of the effort, 146 health professionals and people with lupus from 35 countries participated in a consensus process that reviewed 226 potential measures. The group ultimately narrowed those measures to 39 candidates for a proposed updated damage index.

The revised approach is intended to better reflect today’s understanding of lupus and current standards of care. Researchers are also considering how different types and levels of damage should be weighted so that the index can more accurately capture the long-term impact of the disease.

The updated index is still being developed and tested. The next steps include refining the scoring system and evaluating the revised tool for validity, reliability and responsiveness before it can be considered for broader use.

For people living with lupus, more accurate ways to measure long-term damage could help researchers and healthcare providers better understand disease progression, compare outcomes and improve future care.

For additional information, read the full research summary from the Lupus Foundation of America.