Clinical Trial Data Rights?

“If you expose human beings to an experimental treatment, the public has a fundamental right to see the results of those experiments.” – Steven Nissen, chairman of the cardiology department at the Cleveland Clinic, quoted in The Sunlight Foundation’s account of Bray Patrick-Lake, an e-patient who has left with only questions after a clinical trial ended abruptly.


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4 Responses to “Clinical Trial Data Rights?”

  1. Lodewijk Bos says:

    If I read this correctly, not even consent was given?
    If so, this is a gotspe.

  2. Clinical Trial Data Rights? |

  3. Susannah Fox says:

    The following comment on this post was emailed to me by Ida Sim, MD, PhD, Associate Professor of Medicine and Director, Center for Clinical and Translational Informatics, UCSF. I am posting it with her permission:

    I led the WHO’s International Clinical Trials Registry Platform ( in 2005-6, and established global data and policy standards for trial registration to improve the transparency of clinical trial data reporting. That’s still a strong underlying principle of my work – high-quality, open, and useful clinical research of real people in real life to improve health.

  4. Nayan says:

    Me and my colleagues authored one of India’s most extensive reports on clinical trials. Drop me a mail if you are interested in a copy. My email is

    Some of the topics we included are:

    – Market Trends
    – Growth Drivers
    – Regulatory Bodies and Framework
    – Major Players.
    We interviewed over 200 individuals and firms to collect the data in what we believe is one of the most detailed study on the subject in India.


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