• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Rebel Health
  • Blog
    • greatest hits
    • health data
    • peer-to-peer health care
    • public Q&A
  • About me
    • Bio
    • Now
    • Curriculum vitae
  • Events

Clinical Trial Data Rights?

October 29, 2009 By Susannah Fox 3 Comments

“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 was left with only questions after a clinical trial ended abruptly.

Filed Under: found on the net Tagged With: Cardiology Department, Cleveland Clinic, Clinical Trial Data, Experimental Treatment, Fundamental Right, Human Beings, Patrick Lake, Steven Nissen, Sunlight Foundation

Reader Interactions

Comments

  1. Lodewijk Bos says

    October 29, 2009 at 3:36 pm

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

    Reply
  2. Susannah Fox says

    November 14, 2009 at 10:27 am

    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 (http://www.who.int/ictrp) 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.

    Reply
  3. Nayan says

    March 2, 2011 at 6:17 am

    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 ntaluk@gmail.com.

    Some of the topics we included are:

    – Market Trends
    – Growth Drivers
    – Regulatory Bodies and Framework
    – Major Players.
    -Etc.
    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.

    Nayan
    ntaluk@gmail.com

    Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Footer

Explore

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Topics

  • Seekers
  • Networkers
  • Solvers
  • Champions
  • Health Data
  • Peer-to-Peer Health Care
  • Public Q&A

Recent Comments

  • Jill H. on Case study: Trevor’s disease: “Hello Carrie, I am curious how your son is doing after the surgery? Were you able to fix the locked…” May 28, 19:07
  • Susannah Fox on Jean Nidetch, Rebel Health leader: “Yes! I have enjoyed learning more about her personal story, which is a parable of midcentury feminism. WW was a…” May 9, 10:10
  • barbara figge fox on Jean Nidetch, Rebel Health leader: “Jean Neditch helped so many of us! She changed the landscape for weight reduction by leveraging peer support.” May 9, 08:11

Copyright Susannah Fox © 2025 · WordPress · Log in