Global Experts Share Priorities for Childhood-Onset Lupus Research and Care

In a newly published study, nearly 30 clinical and research experts from around the world share their thoughts on advancing childhood-onset lupus (cSLE) research and care. Participants offered perspectives research priorities, optimal research approaches, and the most pressing challenges and opportunities in cSLE research – and identified many areas of need.

Top priorities that emerged from the expert interviews included:

1. Expanding knowledge of the disease itself. Participants emphasized the importance of better understanding genetic and environmental risk factors related to cSLE, identifying new biomarkers and conducting more cSLE studies (both clinical drug trials and long-term follow-up studies) to find new treatments and improve care.
2. Partnering with patients. Not only is it important for researchers and healthcare providers to reach out to and recruit patients to participate in studies, but researchers should also strive to investigate outcomes that matter most to patients.
3. Enhancing patient care to support research. Improving and standardizing care across individuals and institutions – from helping patients navigate complex healthcare systems and transition to adult care to optimizing their mental health – was a key theme echoed throughout the interviews.
4. Encouraging researcher collaboration. Scientists must be able to work with each other across research centers, geographic boundaries, professional disciplines and industries.
5. Overcoming researcher barriers. The experts shared that researchers need more time, funding and mentorship to successfully advance cSLE research.

This study was funded by the Lupus Foundation of America through its partnership with the Childhood Arthritis and Rheumatology Research Alliance, and the findings aim to help grow and strengthen cSLE research efforts moving forward and may inform future funding priorities.

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