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Co-opting of by Patient-funded Studies

Resource Type: Research Papers

In this commentary, the authors propose additional safeguards for studies listed on, an online registry administered by the National Institutes of Health. They argue that not all of the studies listed comply with ethical, scientific and regulatory research standards for humans and often use confusing or misleading language that implies scientific validity. Specifically, they highlight “lung disease-related studies that have not been reviewed by the FDA and are pay-to-participate” as an area of concern. To address this, the authors outline several measures to improve transparency, preserve the registry’s integrity and ultimately protect prospective study participants from questionable and/or costly clinical trials.

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Wagner DE, Turner L, Panoskaltsis-Mortari A, Weiss DJ, Ikonomou L. Co-opting of by patient-funded studies. The Lancet Respiratory Medicine. 2018;6(8):579-581. doi:10.1016/s2213-2600(18)30242-x. Accessed March 11, 2020.

research & quality improvement


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  • FYI that link does not seem to be working.

    I had no idea some studies were pay to participate.
  • Hi clipper -- both links are working for me -- try this?
    • If you click on the “here” in To “learn more about the authors’ proposed recommendations, click here.” it takes you to an error page not found.

      View Resource works.


    • Clipper -- hopefully everything is as it should be now. : ) Thanks!