Covering Your Health Special Report: The truth about clinical trials
ROCHESTER, Minn. – We’re taking you inside the research labs at Mayo Clinic, where some of the most cutting edge studies are happening as we speak.
We’re introducing you to a group of people who have dedicated their lives to making sure the field of medicine moves forward.
Some may describe Bob Ledebuhr as a human guinea pig, but ask Bob and he just doesn’t see it that way.
Ledebuhr has been participating in research at Mayo Clinic for nearly two decades.
In fact, he recently completed a prescreening for the next one, a study looking into the causes of diabetes.
“I’ve got a particular gene apparently is susceptible, I believe, to diabetes and depending on; I’m going to be taking different solutions and there’s glucose, and whatever else they’re putting in to see how my systems responds to that,” he explains.
For Bob, taking the time to help with these studies and whatever goes along with it; is worth it.
“I feel good about being able to do it, both donating blood and doing the research study. Saving lives; that’s what I’m hoping,” Bob adds.
He’s not alone.
“Every year we receive close to 3,000 calls from all around the world of people contacting us about the latest cancer research.” Toni Mangskau is the Clinical Trial’s Referral Coordinator for the cancer center at Mayo Clinic.
She helps connect patients from a variety of backgrounds with studies that have the potential to prevent, diagnose or treat cancer. She’s seen first hand, the impact.
“Years back there was a young woman who came in and she was being treated for ovarian cancer, and her mother had been in a clinical trial years earlier for ovarian cancer. The phase 1 treatment that the mother had received was now the standard treatment the daughter was receiving,” Mangskau explains.
She says while the mother did die from the disease, her family believes her contribution to research was the final gift she gave.
We wanted to know more about trials currently underway. We met up with two doctors at the forefront of breast cancer research.
“We really feel we want to change the way patients are treated in two and three year’s time and not 10-15 years time.” Dr. Judy Boughey is a Professor of Surgery and is one of the doctors working on what’s called a BEAUTY study.
Participants with aggressive breast cancer tumors are helping researchers figure out what drives that tumor to grow and then what drugs could attack that aspect of the tumor. The patient’s biopsied tumors are implanted in mouse avatars. The doctors are then able to test different kinds of drugs on the infected mice instead of the patients.
“The goal moving forward is once we understand what drugs are going to work best for which mutations, then we can take that into the next clinical trial and give the patients the opportunity to receive the drugs that may be the best for their tumor,” explains Dr. Boughey.
During the study, 140 breast cancer patients continuously receive the standard of care to fight their cancer.
“Where we need to push the field forward are those women who receive standard treatments, and yet, their tumors are not eradicated with standard therapies. So for those patients, it’s critical that we not only have the code for the tumor, but also they want to know how the code changes in the midst of chemo,” says Dr. Matthew Goetz, who is also working on the study.
He says it’s important for people to understand; being a part of a research study will make a difference for the future of medicine.
“The only reason that we’re here today with the fact that we know breast cancer mortality rates is dropping, why is it dropping? It’s because women enrolled in a clinical trial that told us that treatment A was better than treatment B,” he adds.
Both Dr. Goetz and Dr. Boughey agree there still tends to be a stigma surrounding clinical research.
“I think it’s really important to have a significant shift overall in clinical trials to the old fashioned thought of, the patient is a guinea pig, to what I see it right now as; this is an opportunity for the patient,” adds Dr. Boughey.
As for bob, he views his participation as an investment in his health.
“I never know if I’m going to have it, no body knows but if what I’m doing allows them to come up with a cure in any way, shape or form, or just a piece of that puzzle, that makes me feel good.”
Not everyone is as willing to help, in fact only a fraction of patients agree to participate in medical research.
Mangskau says of all the cancer patients being treated at mayo clinic, only 2-5% of them are a part of cancer clinical trials.
The problem with finding willing participants is many don’t know these trials exist.
That was almost the case for Teresa Shaw. The Osage woman is fighting an aggressive form of breast cancer.
Doctors diagnosed her in June but she just discovered a study that makes her a good candidate for research.
She tells us the work is being done to create a resource that will enable Mayo to conduct research into both the cause and outcome of breast cancer.
“For me there might not be any other options so that’s what I kind of think of when I hear that, but I also know it’s very important for the research for other women that are going to be going through it,” says Shaw.
At this point, Teresa has submitted a blood sample and filled out an extensive health history questionnaire.
She has about 5 weeks of chemo left and then will undergo a double mastectomy at Mayo Clinic in January.
We’re happy to say Teresa tells us her tumor is shrinking since she started chemotherapy.
Anyone can be involved in clinical research, whether you’re healthy, at high-risk or already diagnosed with a disease.
In fact one of the easiest ways to do so is to check the box that says your medical records can be used for research when filling out forms at your doctor’s office.
