About 10 days ago I appeared in Phoenix as a speaker at a regional education seminar put on by the Leukemia and Lymphoma Society. My topic was sharing my experience as a participant in a clinical trial. I was delighted to do so, as I feel that trial saved my life and restored me to good health.
I am hoping my words encouraged others to consider being in a trial. There are no guarantees of the result, but trials are always worth considering. Unfortunately, few patients do. That may limit their choices and certainly holds back research that could help others. What a shame.
Clinical trials are defined as human subject research. It is through these trials that we determine if new drugs or devices can better serve patients than what is currently available. Clinical trials are available for almost every disease — although finding these trials can be challenging.
An acquaintance of mine in Seattle named Ryan Luce has just launched a new website to help type 2 diabetes patients understand which clinical trials might be appropriate for them. While there are almost 400 ongoing type 2 diabetes trials in the United States, each of these has additional requirements for enrolling. These requirements might include specific medications, current blood sugar ranges, body mass index, and others. The new website, www.corengi.com, asks some simple questions to each type 2 diabetes patient — and determines which trials might be an option. It then organizes these options by how close they are to your home.
This is the kind of tool that I am hoping will roll out in many conditions. Let’s make it easier for all of us to learn about what trials there are for us, whether they are convenient, and what’s required. That goes beyond the best known site, www.clinicaltrials.gov, which is helpful but Ryan’s effort makes this much more user-friendly. Diabetes is a great start given that it’s an epidemic in the U.S. and the odds are you know someone who has it or will soon.
One other note: As patients, we also need to bring up the topic of clinical trials at almost every visit with our doctor if we have an ongoing condition. What’s new? What’s being studied? Could a trial nearby or even at a distance be right for me? Typically, doctors never talk about this unless it’s their own trial. But we should bring it up. Ryan’s website, starting in diabetes, can give patients the power to learn more and, hopefully, consider enrolling in a trial.
I welcome your comments on why so few of us enter trials and how we can change that. In Europe they do MUCH better. Why are we so different?
Click HERE for links to programs I have hosted about clinical trials, especially in cancer. More programs are coming soon, including one about trials for advanced breast cancer.
Wishing you and your family the best of health,
*This blog post was originally published at Andrew's Blog*