Empowering Patients With MPNs to Participate in Clinical Research

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.

The MPN Research Foundation’s Patient Impact Council was honored at recent CURE MPN Heroes® event for their focus on community-driven advocacy and empowerment. A representative from the council, Robert Greenbaum, was in attendance on its behalf. In addition to his participation in the council, he is also a patient whose disease progressed from essential thrombocytopenia to acute myeloid leukemia.

CURE spoke with Greenbaum to learn more about the importance of clinical trial participation for patients with MPNs and the challenges that researchers face in the field.

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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