Our Board Member and Moderator, Ken Anderson resides in Phoenix and is living with metastatic prostate cancer. He recently uncovered this article on a longstanding controversy over why many trials are not well reported. (rd)
https://www.sciencemag.org/news/2020/01/fda-and-nih-let-clinical-trial-sponsors-keep-results-secret-and-break-law
Seems the topic of clinical research and the data identified when the trials conclude has been around for years but one that I have just recently been forced into exploring in depth. At this point in my prostate cancer journey, certain second line hormone threapy drugs, that I would have hoped extend my life for years, have failed after just a couple months. This seems to be true for others and at the moment no one seems to know why. Is it from starting up front with aggressive treatments like chemotherapy? That may have forced my cancer to change just enough so something within the cancer cell activated and my cancer no longer has the required structure to allow these newer drugs to help extend life.
At this time I am fully aware that managing disease progression and cancer burden is the goal. As we move through these drugs and exhaust the Standard of Care outlined by our medical oncologists, our next option is to look for clinical trials. The data from these trials, both good and bad, has value. I can only hope that even when the data is not published, it is at minimum shared among our finest medical institutions and doctors.
An article published in Science this past month helps outline some of the Centers of Excellence that are doing a fine job with making the data available and others that are not doing so well. Find the article here.
We can only hope that the FDA and the NIH will start to use the power they do have to force more active reporting. The data from these trials, no matter the outcome, should be published in a timely manner.