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Weighing Open Science Against Research Participation Burden in Informed Consent: A Randomized Pilot Study.

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|October 10, 2025
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Summary
This summary is machine-generated.

For Parkinson's disease patients in clinical research, fewer trial visits significantly increase willingness to participate, outweighing open science preferences. This highlights the importance of visit burden in patient decision-making.

Keywords:
benefitburdenclinical trialsevaluability hypothesisopen scienceresearch ethics

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Area of Science:

  • Neurology
  • Clinical Research Methodology
  • Health Decision Science

Background:

  • Patient participation in clinical research involves evaluating complex trial characteristics.
  • Understanding factors influencing patient recruitment is crucial for advancing Parkinson's disease research.

Purpose of the Study:

  • To assess the impact of clinical trial characteristics, specifically visit volume and open data sharing, on the willingness of Parkinson's disease patients to participate.
  • To determine how the presentation of trial information (joint vs. separate) affects patient decision-making.

Main Methods:

  • A survey study involving Parkinson's disease patients randomized to evaluate either one or two clinical trial scenarios.
  • Quantitative analysis of willingness to participate scores based on trial characteristics and information presentation format.

Main Results:

  • Patients evaluating both trials showed greater willingness to participate in protocols with fewer visits (mean difference -0.48).
  • When presented with both trials, patients were less willing to join the higher-visit study compared to those evaluating only that study (mean difference 1.02).
  • Preferences for reduced visit burden strongly influenced decisions, even when open science views were favorable.

Conclusions:

  • Visit frequency is a dominant factor in Parkinson's disease clinical trial participation decisions.
  • Presenting complex information like open science and visit burden separately hinders patient evaluation and decision-making.
  • Optimizing trial design to minimize visit burden is essential for improving patient recruitment in Parkinson's disease research.