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Empowering Patients With MPNs to Participate in Clinical Research

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A patient advocate discusses the difficulties of finding and participating in clinical trials for MPNs, and the impact on research and treatment development.

Despite the need for patients with myeloproliferative neoplasms (MPNs) to participate in clinical trials, challenges persist related to the geographically dispersed patient population, compared with other cancer types, among others.

CURE spoke with Robert Greenbaum, of the MPN Research Foundation’s Patient Impact Council, to learn more about the importance of clinical trial participation for patients with MPNs and the challenges that researchers face in the field. In addition to his participation in the council, he is also a patient whose disease progressed from essential thrombocytopenia to acute myeloid leukemia.

Transcript:

Participation in the clinical trials is so important because there's not a lot of MPN patients out there, right? If you think about other cancers, maybe it's breast cancer or lung cancer — I mean, there might be a lot more patients available to participate in the drug trials. With MPNs, you know, we're more of a diverse population. We're spread out.

So, you know, in my situation, I was fortunate to be close to a leading cancer facility. But if you're in a smaller town, you know, more local, you might go to a hospital, health care provider, they don't have access to drug trials. And then the pharmaceutical companies, they're looking like, how do we find these patients? How do we get them involved in the drug trials? But then you have the challenges of, you know, whether [it’s] transportation costs, you know you might not live right near a leading medical facility where the research is being done. So how do you get back and forth to even participate in the trial? So there's a lot of challenges when it comes to the MPNs.

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