Topic: Clinical trials and advocacy
This is in response to your comments Rick, regarding the lack of research for the disease of Cholangiocarcinoma. I so much agree with you.
Fifty years ago, the National Cancer Institute supported the clinical trial cooperative groups. These groups play a key role in developing new and improved cancer therapies.
Within the 10 cooperative groups clinical trials are conducted through networks of cancer centers and/or community oncology practices throughout the U.S. About 25.000 patients and thousands of clinical investigators have participated in clinical trial studies annually.
Concerns have been voiced regarding the effectiveness of these groups and a review of the Cooperative Group Program has been requested.
http://www.cancer.gov/cancertopics/fact … tive-group
In response to these developments I had been asked to join the Steering Committee Advocate Involvement in Clinical Trial Coordination annual face to face meeting, Washington, D.C.
Much of the discussion focused on the operational efficiency of the working groups, the institutional review boards, and as it was most pertaining to my attendance, the goals for the Patient Advocate Steering Committee.
As mentioned before, I believe that the entire system of clinical trials is antiquated and is in dire need of revamping particularly, in the area of rare diseases. It is believed that only 30 % of all patients respond favorably to the current cancer drugs. This alone is enough reason to overhaul the system. In our case, progress comes slowly in fact; it appears to be moving at a snail