Objective: To develop and refine the Lewy Body Dementia Domain Rating Scale (LBD-DRS) as a disease-specific outcome measure tailored to the unique clinical features of Lewy body dementia (LBD).

Background: There is a critical need for a dedicated measurement scale for Lewy body dementia (LBD), as clinical trials currently rely on outcome measures designed for Alzheimer’s disease and Parkinson’s disease, which fail to capture the complex symptomatic progression of LBD. The lack of standardized outcome measures has led to methodological heterogeneity, limiting data harmonization and comparative analyses across trials. To address this gap, the Lewy Body Dementia Domain Rating Scale (LBD-DRS) is being developed as a consensus-driven, disease-specific tool tailored to the clinical and pathological features of LBD.

Method: An international core working group and a dedicated steering committee have led a structured three-round Delphi survey process to reach consensus on the conceptual framework and preliminary content of the LBD-DRS. LBD researchers and clinicians were invited to participate, with consensus defined as ≥75% agreement on survey statements or questions. The scale was iteratively refined based on Delphi feedback, expert steering committee input and stakeholder engagement.

Results: Consensus has been established among respondents regarding the need for an LBD-specific rating scale, particularly for early LBD. Feedback from two prior iterations has informed the development of a third version of the LBD-DRS, comprising six symptom and functional domains. This version was refined through the guidance of a dedicated steering committee and advice from regulatory and consumer stakeholders. The third rounds of the Delphi process was completed in 2025. Its results, along with the latest version of the LBD-DRS, will be presented. A pragmatic, inclusive scoring approach to the LBD-DRS has been adopted, with recognition that further refinements will follow as field data become available.

Conclusion: An LBD-specific outcome measure has been developed for capturing symptom severity and functional decline in LBD. With consensus now established on the most recent version of the content and format of LBD-DRS, the next steps involve field testing and validation with ongoing engagement with regulatory agencies and the pharmaceutical industry.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-of-the-lewy-body-dementia-domain-rating-scale-lbd-drs-a-disease-specific-outcome-measure/