“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.
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Clinical Trial Data Rights? | e-Patients.net http://ow.ly/xp0o
If I read this correctly, not even consent was given?
If so, this is a gotspe.
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.
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