Disease progression strikingly differs in research and real-world Parkinson’s populations Article Swipe
Brett K. Beaulieu‐Jones
,
Francesca Frau
,
Sylvie Bozzi
,
Karen J. Chandross
,
Michel Peterschmitt
,
Caroline Cohen
,
Catherine Coulovrat
,
Dinesh Kumar
,
Mark J Kruger
,
Scott Lipnick
,
Lane Fitzsimmons
,
Isaac S. Kohane
,
Clemens R. Scherzer
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1038/s41531-024-00667-5
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1038/s41531-024-00667-5
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.
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Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1038/s41531-024-00667-5
- https://www.nature.com/articles/s41531-024-00667-5.pdf
- OA Status
- gold
- Cited By
- 15
- References
- 67
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4392740577
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4392740577Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1038/s41531-024-00667-5Digital Object Identifier
- Title
-
Disease progression strikingly differs in research and real-world Parkinson’s populationsWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2024Year of publication
- Publication date
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2024-03-13Full publication date if available
- Authors
-
Brett K. Beaulieu‐Jones, Francesca Frau, Sylvie Bozzi, Karen J. Chandross, Michel Peterschmitt, Caroline Cohen, Catherine Coulovrat, Dinesh Kumar, Mark J Kruger, Scott Lipnick, Lane Fitzsimmons, Isaac S. Kohane, Clemens R. ScherzerList of authors in order
- Landing page
-
https://doi.org/10.1038/s41531-024-00667-5Publisher landing page
- PDF URL
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https://www.nature.com/articles/s41531-024-00667-5.pdfDirect link to full text PDF
- Open access
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YesWhether a free full text is available
- OA status
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goldOpen access status per OpenAlex
- OA URL
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https://www.nature.com/articles/s41531-024-00667-5.pdfDirect OA link when available
- Concepts
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Medicine, Cohort, Disease, Cohort study, Gerontology, Medical record, Cognition, Cognitive decline, Demography, Psychology, Internal medicine, Psychiatry, Dementia, SociologyTop concepts (fields/topics) attached by OpenAlex
- Cited by
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15Total citation count in OpenAlex
- Citations by year (recent)
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2025: 7, 2024: 8Per-year citation counts (last 5 years)
- References (count)
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67Number of works referenced by this work
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-
10Other works algorithmically related by OpenAlex
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| abstract_inverted_index.real-world. | 282 |
| abstract_inverted_index.[2.1–2.4]; | 250 |
| abstract_inverted_index.availability | 25 |
| abstract_inverted_index.challenging. | 305 |
| abstract_inverted_index.data-derived | 59 |
| abstract_inverted_index.differences, | 297 |
| abstract_inverted_index.longitudinal | 75 |
| abstract_inverted_index.measurements | 161 |
| abstract_inverted_index.particularly | 35 |
| abstract_inverted_index.populations, | 22, 210 |
| abstract_inverted_index.populations. | 61, 265 |
| abstract_inverted_index.progression. | 164 |
| abstract_inverted_index.representing | 115 |
| abstract_inverted_index.supplemented | 146 |
| abstract_inverted_index.Parkinson’s | 3, 261 |
| abstract_inverted_index.de-identified | 123, 138 |
| abstract_inverted_index.subpopulations. | 17 |
| abstract_inverted_index.Characterization | 1 |
| abstract_inverted_index.characterization | 259 |
| abstract_inverted_index.Claims-electronic | 108 |
| abstract_inverted_index.self-survey-based | 93 |
| cited_by_percentile_year.max | 99 |
| cited_by_percentile_year.min | 98 |
| corresponding_author_ids | https://openalex.org/A5023428054 |
| countries_distinct_count | 3 |
| institutions_distinct_count | 13 |
| corresponding_institution_ids | https://openalex.org/I136199984 |
| sustainable_development_goals[0].id | https://metadata.un.org/sdg/4 |
| sustainable_development_goals[0].score | 0.7400000095367432 |
| sustainable_development_goals[0].display_name | Quality Education |
| citation_normalized_percentile.value | 0.97781973 |
| citation_normalized_percentile.is_in_top_1_percent | False |
| citation_normalized_percentile.is_in_top_10_percent | True |