Dataset Information

A multimodal dataset of real world mobility activities in Parkinson's disease.

ABSTRACT: Parkinson's disease (PD) is a neurodegenerative disorder characterised by motor symptoms such as gait dysfunction and postural instability. Technological tools to continuously monitor outcomes could capture the hour-by-hour symptom fluctuations of PD. Development of such tools is hampered by the lack of labelled datasets from home settings. To this end, we propose REMAP (REal-world Mobility Activities in Parkinson's disease), a human rater-labelled dataset collected in a home-like setting. It includes people with and without PD doing sit-to-stand transitions and turns in gait. These discrete activities are captured from periods of free-living (unobserved, unstructured) and during clinical assessments. The PD participants withheld their dopaminergic medications for a time (causing increased symptoms), so their activities are labelled as being "on" or "off" medications. Accelerometry from wrist-worn wearables and skeleton pose video data is included. We present an open dataset, where the data is coarsened to reduce re-identifiability, and a controlled dataset available on application which contains more refined data. A use-case for the data to estimate sit-to-stand speed and duration is illustrated.

SUBMITTER: Morgan C

PROVIDER: S-EPMC10733419 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature

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A multimodal dataset of real world mobility activities in Parkinson's disease.

Morgan Catherine C Tonkin Emma L EL Masullo Alessandro A Jovan Ferdian F Sikdar Arindam A Khaire Pushpajit P Mirmehdi Majid M McConville Ryan R Tourte Gregory J L GJL Whone Alan A Craddock Ian I

Scientific data 20231220 1

Parkinson's disease (PD) is a neurodegenerative disorder characterised by motor symptoms such as gait dysfunction and postural instability. Technological tools to continuously monitor outcomes could capture the hour-by-hour symptom fluctuations of PD. Development of such tools is hampered by the lack of labelled datasets from home settings. To this end, we propose REMAP (REal-world Mobility Activities in Parkinson's disease), a human rater-labelled dataset collected in a home-like setting. It in ...[more]

PMID: 38123584

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Project description:Characterization of Parkinson's disease (PD) progression using real-world evidence could guide clinical trial design and identify subpopulations. Efforts to curate research populations, the increasing availability of real-world data, and advances in natural language processing, particularly large language models, allow for a more granular comparison of populations than previously possible. This study includes two research populations and two real-world data-derived (RWD) populations. The research populations are the Harvard Biomarkers Study (HBS, N = 935), a longitudinal biomarkers cohort study with in-person structured study visits; and Fox Insights (N = 36,660), an online self-survey-based research study of the Michael J. Fox Foundation. Real-world cohorts are the Optum Integrated Claims-electronic health records (N = 157,475), representing wide-scale linked medical and claims data and de-identified data from Mass General Brigham (MGB, N = 22,949), an academic hospital system. Structured, de-identified electronic health records data at MGB are supplemented using a manually validated natural language processing with a large language model to extract measurements of PD progression. Motor and cognitive progression scores change more rapidly in MGB than HBS (median survival until H&Y 3: 5.6 years vs. >10, p < 0.001; mini-mental state exam median decline 0.28 vs. 0.11, p < 0.001; and clinically recognized cognitive decline, p = 0.001). In real-world populations, patients are diagnosed more than eleven years later (RWD mean of 72.2 vs. research mean of 60.4, p < 0.001). After diagnosis, in real-world cohorts, treatment with PD medications has initiated an average of 2.3 years later (95% CI: [2.1-2.4]; p < 0.001). This study provides a detailed characterization of Parkinson's progression in diverse populations. It delineates systemic divergences in the patient populations enrolled in research settings vs. patients in the real-world. These divergences are likely due to a combination of selection bias and real population differences, but exact attribution of the causes is challenging. This study emphasizes a need to utilize multiple data sources and to diligently consider potential biases when planning, choosing data sources, and performing downstream tasks and analyses.

Dataset Information

A multimodal dataset of real world mobility activities in Parkinson's disease.

Publications

A multimodal dataset of real world mobility activities in Parkinson's disease.

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