There is a lot of pressure on cancer survivors to participate in clinical trials. Without the brave individuals willing to participate in the trials research would grind to a halt along with new, improved treatments for all cancers.
Even though an estimated 2.3 million people in the United States take part in clinical trials every year and researchers struggle to find additional willing participants many complain that they never find out the results of the trial, even after they take the potentially significant risks inherent in many trials. There are no requirements that researchers share the results of the trial with participants. Many trial participants feel anger confused, frustrated, and, in some cases, lacking information that may be important to their health.
To help eliminate this problem researchers at the University Of Rochester Medical Center have proposed a new approach to disseminate the results of clinical trials to study volunteers and deal with this significant oversight.
Currently, researchers are only required to inform participants when new information arises that may affect a volunteer’s willingness to continue their participation in the study. Rarely do federal guidelines or institutional review boards require disclosure of results at the conclusion of a study – even if the study is halted because of negative effects. The result is that many research participants never learn the outcome of studies in which they volunteer nor the potential problems that might affect their future health.
The neurologist Ray Dorsey, M.D., the report’s author said, “Individuals who volunteer to participate in clinical research frequently expose themselves to risks, both known and unknown. Because of their participation, they should be informed of the results of these studies in a timely and personalized manner.”