ArticleBioSocieties2023
Entrepreneurial treatment activism for undone science: mannitol and Parkinson's disease.
Article in BioSocieties, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 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
2 citing papers in PubMed.
- "The more you learn, the more you can influence"-learning circles to support citizen science in Parkinson's disease: a pilot study in Sweden.Frontiers in public health · 2025Article
- Responsibility in Medical Sociology: A Second, Reflexive Look.The American sociologist · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol-essentially, an orphan drug-as a Parkinson's disease treatment. As such, CliniCrowd addresses 'undone science', and our paper contributes to the sociological literature thereon. Based on 38 qualitative interviews, fieldwork, and content analyses (2017-2020), we trace CliniCrowd's background and rationale. We: discuss undone science and its wider contexts; present earlier iterations of citizen-science and treatment activism; examine CliniCrowd's application of crowd-sourced citizen-science to address undone science around 'orphan drug' treatment for Parkinson's disease; explore how CliniCrowd has evolved, and re-framed its work, since its founding; ponder its future; and consider whether their approach can guide future citizen-science treatment research. Our paper contributes to the existing literature in four ways. First, we focus on medical treatment issues, an under-studied area of undone science. Second, we highlight orphan drugs as both major source of, and fruitful area for research on, undone science. Third, we describe CliniCrowd's pragmatic, entrepreneurial-rather than the more common activist-citizen-science approach to addressing undone treatment science. Finally, from our data on CliniCrowd we distil a preliminary model for future treatment activism around undone science.
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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.