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Attitudes toward Potential Participant Registries.

Joshua D Grill1,2, Andrew Holbrook1,3, Aimee Pierce1,4

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Most participants are willing to join medical research registries, but online or email sign-ups reduce interest. Data security concerns are key for successful participant recruitment.

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Area of Science:

  • Clinical Research Operations
  • Participant Recruitment Strategies
  • Health Data Management

Background:

  • Participant recruitment is a major challenge in medical research.
  • Potential participant registries are a common solution, but design data is limited.

Purpose of the Study:

  • To survey cognitively normal participants about their preferences for potential participant registries.
  • To inform the design and implementation of effective participant registries for clinical studies.

Main Methods:

  • Survey of 110 cognitively normal individuals in a longitudinal aging and dementia study.
  • Assessed willingness to enroll in registries based on different enrollment methods and data sharing models.

Main Results:

  • 78% of participants were likely to enroll in a registry.
  • Willingness decreased significantly for internet (26%) or email (38%) enrollment.
  • No preference difference between shared contact vs. honest broker models (28% vs. 30%).

Conclusions:

  • Registry design, particularly enrollment method, impacts potential participant populations.
  • Addressing data security concerns, especially regarding for-profit sharing, is crucial for maximizing enrollment.
  • Managing participant expectations regarding data privacy is essential for registry success.