Background/Purpose: Neuropsychiatric systemic lupus erythematosus (NPSLE) is a major end-organ manifestation of childhood-onset systemic lupus erythematosus (cSLE) and is poorly understood. High-quality, collaborative and patient-centered studies are critically needed to address important gaps in scientific understanding knowledge and evidence-based care of NPSLE. Thus, our objective was to build consensus on key research domains and topics for NPSLE using a modified Delphi-based process integrating clinician, researcher, and family perspectives.

Methods: A multidisciplinary, international NPSLE taskforce comprised of pediatric rheumatologists, pediatric neuroimmunologist, psychiatrists, psychologists, research coordinators, and a family advisory council (FAC) of patients and caregivers was reconvened in August 2025. The group met via zoom, with all sessions recorded, to review prior work that identified 12 research domains (each with 4 -13 research topics) and 9 statements on perceived facilitators of NPSLE research. A preliminary Delphi survey was administered to the taskforce via REDCap with a 3-week response period. Each research topic was evaluated on a 5-point Likert scale ranging from Strongly Disagree to Strongly Agree. Members provided explanations for Agree, Disagree, Neutral or Strongly Disagree responses. A consensus threshold of  ≥70% agreement was decided apriori. Between September and October 2025 two meetings were held to review the survey results. Topics and statements meeting agreement threshold were finalized, while those requiring clarification were revised and moved to the Welphi® platform – an online Delphi tool supporting live and asynchronous voting across multiple rounds.

Results:  Of 29 taskforce members invited, 25 agreed to participate in the initial online survey, and 20 completed it (80% response rate; one incomplete). Taskforce demographics are shown in Table 1. Across all research domains, 34 research topics and 7 facilitator statements met the ≥70% agreement threshold and were accepted into the final survey. Nine topics met the overall threshold but lacked strong agreement; however, they remained unedited and were included in the final survey. Twenty-six research topics and 2 facilitator statements required minor edits and were advanced to the Welphi platform for additional voting, while 1 topic that did not meet the threshold was carried forward to Welphi for re-evaluation. Fourteen members participated in the Welphi voting (7 during the live session and 7 asynchronously). In Round 1, all research topics reached consensus, while one overlapping topic (Domain 4, Topic 2) was dropped. Table 2 summarizes change in agreement between the initial and Welphi surveys.

Conclusion: Through a structured modified Delphi process combining initial online survey and Welphi rounds, the Taskforce achieved consensus on key pediatric NPSLE research priorities, laying a foundation for further patient-centered studies aimed at improving care and outcomes for childhood-onset NPSLE.

Table 1

Table 2

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/building-consensus-on-key-research-domains-and-research-topics-in-childhood-onset-neuropsychiatric-lupus-an-international-prioritization-initiative/