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Awareness: Making a Difference Through MPN Clinical Trials

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Published on September 15, 2016

Are there resources for MPN patients? The answer is an emphatic "YES!" A panel of MPN experts/advocates discuss this question with an eye toward clinical trials. PA-C Lindsey Lyle of University of Colorado and Dr. Srdan Verstovsek of MD Anderson Cancer Center offer multiple reasons why a clinical trial could be the best possible option for exceeding standard of care. Dr. Verstovsek says, "[Clinical trials] help the patient by providing something that is better than what is normal." Executive Director of MPN Research Foundation, Michelle Woehrle points out that her foundation earmarks the majority of their financial contributions toward research.

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Transcript | Awareness: Making a Difference Through MPN Clinical Trials

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

So, Lindsey, I wanted to step back to just the individual level for a second. So your institution and MD Anderson where Dr. Verstovsek is and Dr. Mesa at Mayo Clinic and other leaders in the field, there’s research going on. Could you talk about why someone should at least consider being in a clinical trial?

Lindsey Lyle:       

Absolutely. So the number one thing that a patient should recognize when considering a clinical trial is that their medical team would be presenting them with these options because, 1) we think it would be beneficial to them based on what we have known in the pre-clinical data or in, you know, earlier phases of the trial with—with the medication. And so 1) recognizing that that is our—our number one goal for that patient to get—to get really good care with something that is not commercially available. And specifically in MPNs, you know, we have a variety, but maybe just a handful of—of therapies that are available outside of the clinical trial.

And not every patient is going to have the molecular or laboratory values that would make the commercially available medications correct for them. And so specifically, in that case, definitely considering a clinical trial is really important. I would also like to say, you know, the way that drugs are developed is through clinical trials. You know, everything that is really on the market has gone through a clinical trial. 

So I think it’s important to communicate that to the patients, too, is that this is the way that drugs are developed and that they do get approved to help other people, you know, in the future, once they hopefully have reached you know, good efficacy from the trial and then are commercially available. So they can really help the field by considering to enroll in the clinical trial, but, at the same time, realizing that the reason we would want to enroll someone is that we think it would be beneficial to them. 

Andrew Schorr:                  

Okay. And I think we all owe a debt of thanks to people who participated. I was fortunate that a medicine had just been approved when I was diagnosed with myelofibrosis, it’s been working for me. And had patients not been in the trial, it wouldn’t have been there. So I’m very grateful. Dr. Verstovsek, do you want to say anything more about clinical trial participation and us working together. 

Dr. Verstovsek: 

Absolutely. It is, first of all, correct, and I think this is most important for the patient to feel that, indeed, what we suggest by suggesting patients to participate in clinical trials is that that would be beneficial for him or her. That’s the goal, right? It is not just the goal to see about the benefits for the others in the future, which is obvious in the second leg. It is first leg to help the patient by providing something that is better than what is normal, to develop something new for the patient. And then, that will, certainly, help the others.

So the patient participation in clinical studies might be viewed even as being ahead of a time and having something given that will be becoming normal for everybody up to the future. So nobody should be scared. The safety boundaries are in place for any clinical study. It is not really that we give the medications no matter what. First is the safety, and then is the efficacy. So participation in the clinical study is built in that way to safely provide the new medication and develop new drugs for everybody else. And we should be all engaged in that process together understanding the full aspect of what is this for the patient and for our community later on in the process.

Andrew Schorr:                  

Michelle, I wanted to come to you on two regards. First of all, you seek funding—and some funding from people in the community if they want to help. And that’s to help you research more and encourage often young researchers who might not qualify for the big, National Cancer Institute grant or other funding sources. So first of all, can people help? Can people make donations to the MPN Research Foundation? 

Michelle Woehrle:            

Yes, absolutely. If you go to our website, MPNResearchFoundation.org, you’ll be able to get very easily to a place where you can make a donation.

And yes, the vast majority of all of our contributions go towards research.  

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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