Objective: To synchronize data collection, the National Institute of Neurological Disorders and Stroke recommended Common Data Elements (CDEs) for use in Parkinson’s disease (PD) research.
Background: This study delineated the progression patterns of these CDEs.
Method: One hundred-twenty-five PD and 93 control subjects participated in the PD Biomarker Program (PDBP) at Penn State. CDEs, including MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS)-total, questionnaire-based non-motor (-I) and motor (-II), and rater-based motor (-III) subscales; Montreal Cognitive Assessment (MoCA); Hamilton Depression Rating Scale (HDRS); University of Pennsylvania Smell Identification Test (UPSIT); and PD Questionnaire (PDQ-39) were obtained at baseline and three annual follow-ups. Annual changes were compared between controls and PD or subgroups (early=PDE, disease duration <1 y; middle=PDM, disease duration 1-5 y; and late=PDL, disease duration >5 y) using mixed effects model analyses.
Results: UPDRS-total, -I, -II, and PDQ-39 scores increased, whereas UPSIT decreased within PD, but only UPDRS-I, -II, and UPSIT remained significant when compared to controls. UPDRS-I and -II increased, whereas UPSIT decreased, in PDE; UPSIT and MoCA decreased in PDM; and UPDRS-II increased in PDL, both within PD subgroups and compared to controls. Sensitive analyses using subjects with complete data confirmed these findings, but identified PDQ-39 also increased in PDL.
Conclusion: Among CDEs, UPDRS-I, -II, and UPSIT, but not UPDRS-III (standard for many PD clinical trials), are the most sensitive metrics to track PD progression. These CDEs also have distinct stage-dependent patterns of change. This information shall inform PD progression and outcome metric selection for future biomarker research and clinical trials.
This abstract also was presented at the AAT-AD/PD 2020 meeting held in Vienna, Austria April 2-5, 2020.
To cite this abstract in AMA style:
M. Lewis, E. Harkins, E. Lee, C. Stetter, B. Snyder, T. Corson, G. Du, L. Kong, X. Huang. Clinical progression of Parkinson’s disease: insights from the NINDS common data elements [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/clinical-progression-of-parkinsons-disease-insights-from-the-ninds-common-data-elements/. Accessed July 13, 2025.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/clinical-progression-of-parkinsons-disease-insights-from-the-ninds-common-data-elements/