“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.
Lodewijk Bos says
If I read this correctly, not even consent was given?
If so, this is a gotspe.
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 (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.
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 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