Clinical research in real time by real people. Can it be done?

by Gwen on April 5, 2012

Clinical research (that is, research done on humans) is very expensive.  So many researchers resort to test tubes and animal subjects instead. However, it is an open secret that more than 90% of such research does not pan out when done on humans.  (Of course, every researcher is sure that his or her research will successfully make the leap.)  See Dr. Gwen Stritter’s Breast Equity blog post for more on this subject.

Clinical research takes six to ten years to answer just one specific question about metastatic breast cancer (MBC) treatment.  Those with MBC do not have the luxury of waiting so long for answers.  And when the phase III trial results are published, they rarely have any information on the herbs, supplements or other low toxicity approaches that so many are  using.

To avoid this long delay for results, why not ask those living with MBC to share with us their treatment information, (alternative, integrative and conventional) which can then be entered into an online database that will provide statistically useful information about the effectiveness of, say the iodine supplementation, or metformin, or vitamin D3, in real time at the click of a mouse?  Effectiveness would be measured by increased survival (for example, six months or more).

The hard truth is that less than 10% of all preclinical research passes phase III clinical trials.  That’s a terrible batting average – one that won’t be hard to beat with a people-powered database that can become a much more reliable hypothesis-generator for clinical research.

The first question that needs to be answered is whether this type of research possible.  Fortunately, the amazing Dr. Al Musella set up just this kind of online database for those with brain cancer (find out more about him at several years ago.  Although such patients find his database a very useful resource, the information gathered could not reach statistical significance for many types of brain cancer since the numbers of patients with each type were relatively small (100 – 200 patients).  Unfortunately, for the victims, but fortunately for the statistics, this is not the case with metastatic  breast cancer.  Thousands of women (and a few men) suffer from this disease so our database will have a large pool of potential participants.

Another website, Patients Like Me, has an online database where patients of every type can log their treatments and symptoms.  This information is then sold to corporations. This is very different from our vision the MBC iResearch project.  First of all, our project will be funded by grants and donations.  There will be no data access sold to any corporation.

We invite all of you who want to know the low-toxicity treatments most likely to be effective for metastatic breast cancer, without waiting six to ten years for phase III clinical trial results, to please stay tuned to our new nonprofit, People-Powered Research. When we pull this off, it will be a game-changer in the world of clinical research!

If you have any questions or would like to help, please email us here.

Posting revised by Valerie Green, Autumn Stanley, Gwen Stritter and Meg Patterson on March 3, 2014.

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