Tag Archive for: MPN Research Foundation

Resources for Accessing MPN Clinical Trials

Resources for Accessing MPN Clinical Trials from Patient Empowerment Network on Vimeo.

What are credible resources for accessing MPN clinical trials? Dr. Angela Fleischman shares credible resources for MPN patients and advice for inquire about clinical trial participation.

Dr. Angela Fleischman is a physician scientist and assistant professor in the Department of Medicine at the University of California, Irvine. Learn more about Dr. Fleischman.

See More From MPN Clinical Trials 201

Related Programs:

Advancing MPN Research: How Clinical Trials Work

Advancing MPN Research: How Clinical Trials Work

Health Equity: Accessing Quality MPN Care and Clinical Trials

Health Equity: Accessing Quality MPN Care and Clinical Trials

Clinical Trials As an MPN Treatment Option_ What You Should Know What’s Right for You?

Clinical Trials As an MPN Treatment Option: What You Should Know



What if an MPN trial isn’t offered at the center where a patient receives care? What can they do?  

Dr. Fleischman:

Many times, specific clinical trials are only open at specific universities. And so, it’s very likely that your university, or the place where you receive care, may have a few clinical trials, or maybe one, or maybe zero for MPNs, but may not necessarily fit your exact circumstances. 

So, what I would recommend is, doing searching on your own, either through clinicaltrials.gov, or the MPN Research Foundation also has some nice resources, but doing some research on your own to identify some potential clinical trials that you’re interested in, and then go to your primary oncologist and say, “Hey, I printed these out. I think these might look really interesting to me.” 

And usually, on clinicaltrials.gov, they would have where they are, and you can actually, also, search for your state. So, maybe bring some that are close to you, and discuss with your primary oncologist the pros and cons of them. And then, ask your primary oncologist to make a referral to the location where they offer that specific trial. 

And a lot of times, you can – there’s a phone number you can call and be pre-screened. Say, “Hi, I’m a 55-year-old man with myelofibrosis,” and there are specific inclusion, exclusion, criteria that they can ask you. And if you don’t meet the inclusion criteria, then it’s not worth your time to go and have an actual visit, but if you do meet the inclusion criteria, then you could go and have an actual visit, and learn a little bit more.  


Oh, that’s great information. Thank you.  

Is There MPN Research Underway to Help Understand Progression?

Is There MPN Research Underway to Help Understand Progression? from Patient Empowerment Network on Vimeo.

How and why do MPNs progress? MPN specialist Dr. Joseph Scandura shares an update on research being done to better understand–and possibly prevent–disease progression.

Dr. Joseph Scandura is an Associate Professor of Medicine and Scientific Director of the Silver MPN Center at Weill Cornell Medicine. Learn more about Dr. Scandura.

See More From Thrive MPNs


Related Programs:

What Are the Signs of MPN Progression?

What Are the Signs of MPN Progression?

What Are Indicators of MPN Progression?

What Are Indicators of MPN Progression?

Expert Perspective: Hopeful MPN Research and Development


Katherine Banwell:

Is there research being done on MPN progression to understand how it happens or even prevent or slow progression? 

Dr. Scandura:

Yeah. There’s a lot. I think there is a – from both the sort of basic laboratory using animal models to try to understand what are the kind of systems that are involved in how these diseases change. What genes are involved? How do they talk to each other? You know, these are not cells that live in a vacuum, right? They live in a special microenvironment. What are the signals that crosstalk between the MPN cells, the MPN stem cells, and their microenvironment?  

And so, there’s a lot of research on that and the basic side of things. In humans, there’s a lot that has been done over the years in terms of trying to understand what are some of the genetic features of progression. And I think we’re beginning to get a little bit of a better understand of what are the non-genetic things that are associated with progression.  

I was part of an effort from the MPN Research Foundation and still am.  

They have what they call the Progression Network, where they tried to put together a number of investigators from really across the world to share ideas about the nature of progression and how we might look at studying this and understanding ways to prevent progression.  

I think we do have some drugs now that show some promise in terms of being able to prevent progression. I think interferons have shown this in polycythemia vera in terms of a promise for improved long-term outcomes and delayed risk progression. I think that the gold standard randomized trials are maturing and are sort of bearing out some of the same findings that have been observed retrospectively, so sort of kind of looking back in time.  

But the difficulty is that it can take a long time for patients to progress. And you say, “Oh, that’s great.” And that is great. But, from a research – from a statistical side, it means things are really slow. If you have to wait 15 years to assess whether or not people progressed less in one treatment versus another, it’s really slow going. And so, we have to do a compromise of what’s – you know, what do animal studies say? What does retrospective analysis, when we might have people who started treatment 30 years ago, and now we’re just seeing how did it all work out? It’s not a perfect study, because biases can creep in, but it’s what we have now. And so, there’s a lot. And I think, increasingly, progression is being recognized as a goal of therapy, to prevent progression.   

Personally, it is one of my major goals, because I think we do a pretty good job at preventing clots with available treatments. But I don’t think we do a very good job at preventing progression, mostly, because we don’t exactly understand what’s driving that. And so, I think until we develop that deeper understanding and really invest the time and effort in terms of learning which approaches can help prevent progression, we’re going to continue to have these questions.  

Are Mobile-Optimized Tools Impacting MPN Care?

Are Mobile-Optimized Tools Impacting MPN Care? from Patient Empowerment Network on Vimeo.

How is myeloproliferative neoplasm (MPN) impacted by mobile-optimized tools? Dr. Kristen Pettit from Rogel Cancer Center shares digital education resources and patient education websites to aid in MPN patient support and education.

See More From the MPN TelemEDucation Resource Center

Related Resources:

What Does Teleoncology Mean for Myeloproliferative Care?

What Is Chronic Neutrophilic Leukemia?

Understanding What ECG Monitoring Tools Mean for MPN Patients


Dr. Kristen Pettit:

There are a wealth of resources online in the MPN world, there are a number of different digital education resources that have expanded even with COVID, a lot of patient education materials that are out there on various different websites, from the Patient Empowerment Network to the MPN Research Foundation and MPN Advocacy & Education International.

There are also symptom trackers that can be very helpful to where you can enter your individual symptoms as often as you want to and get a more objective number to follow how you’re feeling over time and see how things may be progressing over time.

MPN Digital Sherpa™ Workshop

We will be holding a MPN specific Digital Sherpa Program on Saturday, September 16, 2017 in partnership with MPN Research Foundation.

The Digital Sherpa™ Program consists of a workshop to help cancer patients and caregivers become more tech-savvy. A group of 10 to 20 cancer patients or caregivers who express a desire to become more competent in Internet and social media skills meet with college students who have been specially trained as Internet “Sherpas” to offer them a workshop in these skills. The patients or caregivers bring their own laptop or tablet that they normally use. When registering, patients and caregivers will be asked to fill out a very brief survey about their internet activity and skills so that we can best determine their needs. A Patient Empowerment Network representative will run the workshop, and refreshments will be provided.

The students will offer help in basic skills and may include the following:

  • Basic Internet skills
  • Basic twitter skills (opening a twitter account, how to tweet, how to build followers, how to add images, whom to follow, privacy protection, hashtags, tweetchats)
  • Basic Facebook skills (opening an account, privacy settings, how to post, Facebook etiquette)
  • Google searches and how they work
  • Patient Communities such as Treatment Diaries, PatientsLikeMe, StupidCancer, HealthUnlocked, Cancer Support Community
  • Bookmarking, linking, sharing
  • Youtube, OncologyTube, etc.

To Register:

Tag Archive for: MPN Research Foundation

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