Myeloma Expert Debunks Common Clinical Trial Misconceptions
Myeloma Expert Debunks Common Clinical Trial Misconceptions from Patient Empowerment Network on Vimeo.
Dr. Abdullah Khan, a myeloma specialist, shares advice for individuals that may be hesitant to participate in a clinical trial, reviews the phases of trials, and explain the informed consent process.
Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Abdullah Khan.
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Transcript:
Katherine:
What would you say to someone who’s hesitant in participating in a trial?
Dr. Khan:
Well, the decision to participate is complex and personal, but the ultimate decision regarding trial participation rests with the patient. So, some of the reasons why patients might be hesitant, they might have distrust toward the medical community given the history of clinical trials in this country. If we take the example of the abuse of African American patients during the Tuskegee syphilis experiments, that’s just one example.
Katherine:
Yeah.
Dr. Khan:
Another reason patients might be hesitant is they don’t like the idea of being randomized to the treatment that they’re going to get.
So, they might end up getting a placebo. They might get another standard of care. And they might not get that new, fancy drug. So, giving up that level of control does require some compromise. Another reason is the uncertainty of the potential side effects of the chemotherapy drugs, especially if you’re participating in an early-phase clinical trial.
Furthermore, trials require very defined and frequent monitoring sometimes. So, some patients might not like the time commitment to a clinical trial. Another reason might be that there are concerns for cost. I can alleviate that concern by saying that typically there are mandates that the insurer cover the routine costs of clinical trials.
Katherine:
You mentioned some misconceptions. Are there any others that patients might have about participating in a trial?
Dr. Khan:
I guess the two most common things, the first one, and I think all providers have heard this, “I will be treated like a guinea pig.”
Katherine:
Yeah.
Dr. Khan:
For me, that is probably the furthest from the truth because of all the safeguards in place. Clinical trial participants are followed the most closely and probably get more medical attention than someone who is not on clinical trial. To participate in the clinical trial, the participant has to voluntarily – and that’s the keyword – sign an informed consent form. And finally, the participant can also leave the trial at any time for any reason.
Another common misconception is that clinical trials of dangerous because they use untested drugs. There might be some truth to that. There are many phases to clinical trials. And in some early-phase clinical trials it is true that participant may actually be the first to ever get the new therapy.
So, some of the outcomes are not known. But in late-phrase clinical trials, tens to thousands of patients may have already been treated with the study drug, so there a lot of preliminary safety data and also efficacy data.
The Benefits of Participating in a Myeloma Clinical Trial
The Benefits of Participating in a Myeloma Clinical Trial from Patient Empowerment Network on Vimeo.
Myeloma specialist Dr. Abdullah Khan discusses why myeloma patients should consider joining a clinical trial, addresses safety protocols for trials, and shares how participation in research advances medicine.
Dr. Abdullah Khan is a hematologist specializing in multiple myeloma and plasma cell disorders at the Ohio State University Comprehensive Cancer Center – The James. Dr. Khan is also an assistant professor in the Division of Hematology at The Ohio State University. Learn more about Dr. Abdullah Khan.
See More from Myeloma Clinical Trials 201
Related Programs:
|
Understanding the Role of Clinical Trials As a Myeloma Treatment Option |
Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team |
|
Transcript:
Katherine:
I’d like to turn to clinical trials now. Why should a myeloma patient consider participating in a clinical trial?
Dr. Khan:
The main potential benefit to a patient includes getting a new treatment for a disease before it’s even approved for other patient with multiple myeloma. Sure, clinical trials have risks and benefits, but participating in a clinical trial is probably also safer than ever.
What I mean by that is clinicians that participate in clinical trials are required to follow very strict rules and guidelines to make sure the participants are safe, and these rules are enforced by the federal government. Each clinical trial also follows a careful study plan, or protocol, and that describes what researchers will do and when they will do it.
And the principal investigator, or the lead researcher, for that clinical trial has the responsibility that the protocol is followed at every site that the study is available. So, generally, that also means participants will get more frequent health checkups as being part of the clinical trial. And by volunteering for a clinical trial, patients are helping themselves and also the general society for patients afflicted with multiple myeloma.
Katherine:
Right. Everyone who comes after them would be impacted. Why is patient participation in myeloma clinical trials critical to advancing research?
Dr. Khan:
Clinical trials help researchers better understand health and disease. Clinical trial participation is actually considered the gold standard of providing medical healthcare.
And, in fact, every therapy that is currently approved for myeloma right now is a direct consequence of participation of brave volunteers.
Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team.
Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team. from Patient Empowerment Network on Vimeo.
Considering participation in a clinical trial can bring up a lot of questions. Myeloma expert Dr. Melissa Alsina shares advice and key questions patients should ask their healthcare team before joining a myeloma clinical trial.
Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.
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Understanding the Role of Clinical Trials As a Myeloma Treatment Option |
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Transcript:
Katherine:
When a patient is considering participating in a clinical trial, what sorts of questions should they ask their healthcare team?
Dr. Alsina:
I think the number one thing is “How can this help me? What is the potential for this treatment?” The other very important thing is “What are the potential side effects? Has this been done before in other patients? Do you have any experience? What do you think are going to be the side effects or additional risk compared to getting the standard of care?”
And then, I think the third thing is “How much commitment do you need from me?” Because there is no doubt that clinical trials require a lot of commitment. When we are doing a clinical trial, we, for example, have to give all the drugs in the center, usually. Let’s say I’m testing Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (Decadron) followed by CAR-T, for example in patients with high-risk myeloma. That’s one of the studies.
Yeah, you could get Revlimid, Velcade, and dexamethasone anywhere. Those are approved drugs. But if you are participating in a clinical trial, you have to get it at Moffitt or at the center, which means patients traveling back and forth, so that is very important because it requires a lot of commitment from the patients. And I think, on that line also, you can ask as a patient, “Well, what are the resources there in the clinical trial that can help me make that commitment?”
Frequently, clinical trials help patients by paying for their transportation, their gas, their accommodations if they have to stay overnight, to be able to comply and meet all those different visits.
Understanding the Role of Clinical Trials As a Myeloma Treatment Option
Understanding the Role of Clinical Trials As a Myeloma Treatment Option from Patient Empowerment Network on Vimeo.
When it comes to myeloma treatment options, where do clinical trials fit in? Dr. Melissa Alsina of Moffitt Cancer Center discusses the role of clinical trials in a myeloma treatment plan at every stage of a patient’s care.
Dr. Melissa Alsina is an associate professor of medicine in the Blood and Marrow Transplant Program at Moffitt Cancer Center in Tampa, Florida where she also serves as head of the Multiple Myeloma Transplant Program. Learn more about Dr. Alsina, here.
See More from Myeloma Clinical Trials 201
Related Programs:
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Considering Joining a Myeloma Clinical Trial? Questions to Ask Your Healthcare Team. |
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Myeloma Treatment & Research Updates From 2022 ASCO and EHA Meetings |
Transcript:
Katherine:
When it comes to myeloma treatment options, where do clinical trials fit in?
Dr. Alsina:
They fit everywhere, essentially. They fit everywhere because myeloma – even though we have many, many advances, it’s a disease that we cannot cure, so there’s still a lot, a lot of work to do, so we have trials for newly diagnosed patients, improving what we do at newly diagnosed, bringing in some of those therapies, for example, like CAR-T up front, and then we have trials for early relapse/late relapse, because again, yeah, we’ve done a lot and we feel very encouraged by that, but we’re short because we have not been able to cure myeloma.
So, it’s super important, and it’s super important that patients reach out to myeloma centers to see what is available for them because participating in a clinical trial, number one, gives a patient a unique opportunity to get something more than standard of care, something that might make their response better or their survival better.
That’s one thing, and the other thing is the only way we’re able to move the field forward is doing clinical trials and having patients participating in clinical trials, and the reason today I can sit here and tell you that the treatment of myeloma has evolved dramatically in the last 20 years, and now we have these responses that are amazing that were unheard of, is thanks to the many patients that have participated in clinical trials.
Without that, obviously, we would not be here with these results. But that needs to continue. I think we cannot rest because there are still patients that die from myeloma. We cannot lose the perspective that this is still an incurable disease and there’s still a lot of work to do, and the only way to get there is to continue doing the research.
Katherine:
It sounds like clinical trials are also available for patients who have already been treated with another therapy. Is that right?
Dr. Alsina:
Absolutely. Clinical trials are available for all the different stages of the disease – when you are newly diagnosed, when you have your first relapse, when you have your second relapse.
Katherine:
Anytime through the process.
Dr. Alsina:
Anytime, anytime, and there are clinical trials – the clinical trials not only help us test new drugs or new combinations of drugs, but it also helped us understand the disease better. The majority of clinical trials, we do what we call correlative studies, where we get a sample of the patient, the bone marrow of the patient, for example, before and after therapy, and we see what are the changes that we see there and what are the genes that dictate that response or lack of response.
So, clinical trials not only help us improve outcomes in patients, but it also helps us understand the disease better that leads to other new therapies and other clinical advances. This can translate into new clinical advances.
