MPNRF | Under the Microscope
October 2018
Classification and Prognostic Models
Developed for MPN Patient Outcomes

In a recent study published today in  The New England Journal of Medicine , doctors were able to define eight genomic subgroups of MPN patients, using a study of 2,035 people, and then integrated 63 clinical and genomic variables to create a prognostic model capable of generating personally tailored predictions of clinical outcomes in patients with MPNs.

This study suggests the need to continue research into the biology of MPN patients so that they may develop new tools to help treat them. Click the button below to read the full article or click here to use the predictor yourself & don't forget to take whatever you learn with you to discuss with your doctor. 
Study Assesses Curent Guidelines for Treating PV Patients
R esearchers used a representative sample of PV patients who were diagnosed from 2007 – 2013 from the SEER-Medicare database, to study the current recommended guidelines for the treatment of polycythemia vera patients. The SEER-Medicare database was developed by the National Cancer Institute and the Centers for Medicare and Medicaid Services and have been shown to be nationally representative, and account for ∼28% of the US population.

The overall survival and occurrence of thrombotic events were assessed in the 820-patient cohort, along with the method or combination of methods that were used to treat the patients. For example, was the patient undergoing phlebotomies and taking Hydroxyurea (HU), were their symptoms being managed with phlebotomies only, neither phlebotomies or Hydroxyurea or only Hydroxyurea.

According to the article, the conclusion of the study was as follows, “In this population-based cohort study reflecting contemporary clinical practice, we observed improved overall survival and decreased risk of thrombosis in older PV patients treated with phlebotomy and HU. However, both treatment modalities were underused in this population of 820 older patients, as only 64.0% underwent therapeutic phlebotomy, and 60.6% received HU. These findings suggest that patients in our study cohort were undertreated according to ELN and NCCN guidelines.” At MPNRF we encourage you to become educated about your disease and familiarize yourself with the NCCN Guidelines so that you will be in a better position to advocate for yourself and the treatments you require.

Click the button below to read the full study in Blood Advances and click  here   to a feature of the study in the The American Journal of Managed Care.
The MPN Impact Council
Our goal at MPN Research Foundation is to continue investing in research for better treatments while providing education and resources for the MPN community. In order to ensure we are meeting the unmet needs of the patient population, we have founded the MPN Impact Council. The MPN Impact Council will serve MPNRF in an advisory capacity from the point of view of MPN patients. All members of the council will be people living with ET, PV, MF or are transplant survivors.

The advisory group will work with MPNRF’s leadership team including the staff, board members, and scientific advisers to provide counsel and feedback for the foundation’s research investments and advocacy in light of the current landscape of myeloproliferative neoplasms. Our hope is that through the guidance of the MPN Impact Council we will continue to amplify the voices of the community that we work every day to serve. 
Participate in Research
Dr. Gary Luker at the University of Michigan is actively recruiting patients for a study in the hopes of creating an accurate way of assessing the state of the bone marrow of a patient without having to do a traditional bone marrow biopsy.

Dr. Gary Luker at the University of Michigan is actively recruiting patients for a study with the goal to create an accurate way of assessing the state of a patient's bone marrow without having to do a traditional bone marrow biopsy. Interestested patients would be required to travel to the University of Michigan for non-contrast imaging studies.

The long-term goal is to standardize the methods so they can be implemented widely in multi-center trials. If you are interested in participating in this research study please reach out at or click the button below.
Upcoming Event
San Mateo MPN Patient & Caregiver Program

Join MPN Advocacy and Education International in San Mateo, California on Thursday, November 8, 2018 for their Patient and Caregiver Education Program. Listen to speakers like Dr. Ruben Mesa of UT Health San Antonio Care Cancer Center discuss MPN symptom management, Dr. Laura Michaelis of Medical College of Wisconsin discuss the ins and outs of clinical trials as well as doctors Raajit Rampal, Jason Gotlib, Michael Savona, and James Rosetti. Meet the specialists and get current MPN updates! Click the button below to register.
Amazon Smile
Through November 2 , Amazon Smile is donating 5% (ten times the usua l amount!) to The MPN Research Foundation when you shop at .  Click the button below to select MPN Research Foundation as your charitable organization today!
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