ArticleJournal of Parkinson's disease2022
Including People with Parkinson's Disease in Clinical Study Design and Execution: A Call to Action.
Article in Journal of Parkinson's disease, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
7 citing papers in PubMed.
- Digital biomarkers for non-motor symptoms in Parkinson's disease: the state of the art.NPJ digital medicine · 2024Review
- How Lifetime Evolution of Parkinson's Disease Could Shape Clinical Trial Design: A Shared Patient-Clinician Viewpoint.Brain sciences · 2024Article
- Patient and Public Involvement and Engagement in the Development of a Platform Clinical Trial for Parkinson's Disease: An Evaluation Protocol.Journal of Parkinson's disease · 2024Article
- Gender-aware Parkinson's care: a design-based study of patient perspectives on gender norms and gender-sensitive care.EClinicalMedicine · 2023Article
- Improving naturalistic neuroscience with patient engagement strategies.Frontiers in human neuroscience · 2023Article
- People with Parkinson's as Partners for the Journal of Parkinson's Disease.Journal of Parkinson's disease · 2023Article
- The Journal of Parkinson's Disease Takes the Open Road.Journal of Parkinson's disease · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The proactive inclusion of patients in the design and execution of clinical studies has been an emerging focus for decades. Such participatory research helps to design studies better, by addressing relevant research questions and defining outcomes that matter to patients. Yet, much remains to be learned about the best methods and exact impacts of patient engagement in research in general, and more specifically, about the specific challenges that come with Parkinson's disease. Here we present the lived experiences of patient researchers living with Parkinson's disease, as a motivation for the value of their perspectives in research and as a call to action for empirical research on how to successfully include patient researchers.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.