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This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).
© 2025 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.Background: UK Biobank (UKBB) provides extensive genetic, imaging, and health data for ~500,000 participants, enabling studies of prodromal phases of diseases like Parkinson's disease (PD). However, during analysis, we became concerned about the accuracy of diagnosis timing. Objective: To evaluate the accuracy of PD diagnosis timing in UKBB. Methods: We examined PD diagnosis timing using hospital, primary care, death records, and self-reported data. We assessed discrepancies between sources and identified co-occurring diagnoses recorded on the same date as PD. Results: Among 3979 PD cases, 97% of the 786 participants with both self-reported and electronic health records (EHRs) reported their diagnosis earlier than recorded in the EHR, with a typical delay of 5 to 7 years. Multiple codiagnoses were often logged on the same date, suggesting retrospective or batch data entry. Conclusions: Substantial delays in PD documentation may misclassify already diagnosed individuals as prodromal. This introduces significant bias into studies of early disease markers and distorts the timing between risk factors and clinical onset. © 2025 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.
Author(s): Zolfaghari S, Kouchache T, Delva A, Bouhadoun S, Kuhlencord M, Pelletier A, Noyce AJ, Waters S, Belete D, Wilkinson T, Bush K, Morys F, Vo A, Rannikmae K, Dagher A, Postuma RB
Publication type: Article
Publication status: Published
Journal: Movement Disorders
Year: 2025
Pages: epub ahead of print
Online publication date: 04/12/2025
Acceptance date: 19/11/2025
Date deposited: 16/12/2025
ISSN (print): 0885-3185
ISSN (electronic): 1531-8257
Publisher: John Wiley and Sons Inc
URL: https://doi.org/10.1002/mds.70147
DOI: 10.1002/mds.70147
Data Access Statement: The data that support the findings of this study are available from UKBB. Restrictions apply to the availability of these data, which were used under license for this study. Data are available from https://www. ukbiobank.ac.uk/ with the permission of UKBB
PubMed id: 41346098
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