This is exactly what I, and my fellow panelist, "preached" at an industry conference in Philly at the end of January. Not, the thank you cards, but the simpler language in the Informed Consent, availability of trial results, and more specific wording about other issues typically addressed in an IC.
I know that six year out, June will be my last followup, I still have a problem getting results information; how are all of the other treated participants doing. Why is it that my Trial Coordinator can't find this information. I know I was the only treated participant in my trial, but what about other sites.
April 24, 2012, 8:13 AM
Simpler Language, More Access to Results Sought for Clinical-Trial Volunteers
Pressure is growing on researchers to do a better job of communicating the results of clinical trials to the volunteers who participated.
According to a report published in the March issue of Expert Review in Clinical Pharmacology, preparing lay studies is feasible and generally easy to do. However, while most study volunteers are extremely receptive to receiving clinical trial results, most of them never do.
People who agree to participate in clinical research want to know that their involvement informed medical knowledge about disease and how to treat it, says lead author Kenneth Getz, an assistant professor at the Tufts University Center for the Study of Drug Development. He also heads the nonprofit CISCRP and owns CenterWatch, a for-profit publisher of information and data used by clinical research professionals.