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I think it’s important for patients to participate in clinical trials because it helps add to the academic knowledge so that there will be new therapies and new treatments in the future for patients to take advantage of.
Absolutely. Participating in clinical trials in my experience have all been positive. I’ve been able to participate in several new drugs that have come out. I mean also new technological advances to help treat the disease specifically and I believe as a participant I’ve had wonderful experiences. The team has always been able to provide me and with any information that I needed to be successful in my participation.
Like anyone my reservations about going into clinical trials would probably be what are my rights? What am I entitled to? What is the risk? And so those are some of the things that the research teams that I’ve worked with were able to discuss with me to dissuade my fear.
Some of the myths would probably be in my experience with clinical trials are that research teams are really just trying to use you as a guinea pig. Or that research teams are trying to take advantage of you. From a historical perspective that has been true, but we have so many safeguards in place now that assures me and other people who are interested in participating in clinical trials that will not happen any longer.
Patients should do homework by going to clinical trials.gov to be able to research different trials that are available for sickle cell patients. Also asking their research team at their local hospital institution that they may be a part of. To give them more information about current trials I mean just asking their doctor about this. The safeguards about clinical trials and different information that they can get on participating.
You could also go to scdstudies.com.
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