If I were naming this particular clinical trial, I would lose the cutesy acronyms and call it the “You Don’t Need It” study. But that might deter women from signing up, and I really hope that they will.
I only mention this because when I contacted medical researchers and medical centers posted as study participants on the NCI web site, none had heard of TAILORx. In fact, one West Coast lead investigator’s secretary insisted that she had never heard of the study, although the NCI web site listed him prominently.
All was revealed when I finally reached Gwendolyn Holmes, certified clinical research coordinator at St. Vincent’s Medical Center in New York City. She explained that most researchers refer to the trial as the PACCT-1 study—Program for the Assessment of Clinical Cancer Tests-1.
Sure enough, I went back to the NCI press release, where several paragraphs down I found the following quote: “TAILORx is the first trial to be launched as part of a new NCI program, the Program for the Assessment of Clinical Cancer Tests (PACCT), which seeks to individualize cancer treatment by using, evaluating, and improving the latest diagnostic tests.” (More information is available at www.cancer.gov/newscenter/pressreleases/TAILORxRelease.)
Perhaps the NCI press office needs to communicate with the NCI researchers on how they present ideas to the general public. I became frustrated as a reporter and can only imagine how the acronyms might increase the frustration of prospective patients who may already be confused about the details of clinical trials.