New Patient Guidelines from the National Comprehensive Cancer Network Offer Much-Needed Clarity around a Group of Rare Blood Cancers

[FORT WASHINGTON, PA — October 19, 2017] – Patients with blood cancers known as myeloproliferative neoplasms (MPN) have a new resource to help guide them through diagnosis and treatment, in the form of the National Comprehensive Cancer Network® (NCCN®)’s latest addition to the NCCN Guidelines for Patients®. This NCCN Guideline for Patients focuses on the three most-prevalent types of MPN: polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF), which affect approximately 148,000, 134,000 and 13,000 patients in the United States, respectively. 1 Funding for these patient guidelines was provided through the NCCN Foundation® and the MPN Research Foundation.

“As a physician, I find it makes a difference when patients and caregivers have access to the information they need when making treatment decisions, to complement what they’re hearing from me,” explained Brady L. Stein, MD, MHS, Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Dr. Stein is a member of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for MPN. “Sitting in the hematologists’ office can be an overwhelming experience. These patient guidelines provide the most comprehensive at-home resource available for people with these rare diseases. They cover everything from basic explanations to complicated decision-making around diagnostic confirmation, supportive care techniques, treatment sequencing, adverse effects, and more.”

According to Dr. Stein, it’s not uncommon for patients diagnosed with MPN not to understand at first that their condition technically represents a chronic form of blood cancer, or that it can progress. In fact, most patients and caregivers have never even heard of MPN prior to diagnosis.

“When I was first diagnosed with ET, I actually left the office feeling relieved,” said Christy Sayre, a patient living with MPN. “It wasn’t until my pharmacist explained I had a prescription for a chemotherapy drug, that I really had any idea that I had cancer. I just assumed I’d only be taking a blood thinner. I’m grateful that these patient guidelines are helping me to understand what’s going on in my body, and why this chemotherapy is the right treatment path for me.”

“Having this free information available online and on their smartphones is particularly important for patients who can’t just reach out to a friend or relative who’s been through the same experience,” said Robert W. Carlson, MD, NCCN Chief Executive Officer. “The goal is not just to make them feel more informed, but also less isolated.”

NCCN Guidelines for Patients and NCCN Quick Guide™ sheets—one-page summaries of key points in the patient guidelines—are written in plain language and include patient-friendly tools, such as suggested questions for doctors, a glossary of terms, and medical illustrations of anatomy, tests, and treatment. They are based on the same clinical practice guidelines used by health care professionals around the world to determine the best way to treat a person with cancer. Each resource features unbiased expert guidance from the nation’s leading cancer centers designed to
help people living with cancer understand and discuss their treatment options with their providers.

The NCCN Guidelines for Patients and NCCN Quick Guide™ sheet for MPN are available to read and download for free online at NCCN.org/patients and via the NCCN Patient Guides for Cancer mobile app. Printed editions can also be ordered from Amazon.com for a small fee

NCCN currently offers NCCN Guidelines for Patients for the following: Brain, Breast, Colon, Esophageal, Kidney, Non-Small Cell Lung*, Ovarian, Pancreatic, Prostate, Rectal, Stomach and Thyroid Cancers; Acute Lymphoblastic Leukemia; Adolescents and Young Adults with Cancer; Chronic Lymphocytic Leukemia; Chronic Myelogenous Leukemia*; Distress/Supportive Care; Hodgkin Lymphoma; Lung Cancer Screening; Malignant Pleural Mesothelioma; Melanoma*;  Multiple Myeloma*; Myelodysplastic Syndromes*; Myeloproliferative Neoplasms; Nausea and Vomiting/Supportive Care; Non-Hodgkin’s Lymphomas; Soft Tissue Sarcoma; and Waldenström’s Macroglobulinemia. * Indicates NCCN Guidelines with new updates coming soon.

NCCN Guidelines for Patients and NCCN Quick Guide™ sheets DO NOT replace the expertise and clinical judgment of the clinician.


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About MPN Research Foundation
The MPN Research Foundation is the only organization fully dedicated to funding research into the myeloproliferative neoplasms, a rare group of blood cancers which include polycythemia vera, essential thrombocythemia and myelofibrosis. Founded in 2000 by a group of patients, the focus is to fund high innovation research that can expand our understanding of the MPNs and get us closer to a cure.

The Foundation’s Scientific Advisory Board works with the patient-led board of directors to utilize a rigorous selection process to ensure donations are allocated to the most innovative research projects. To date, the Foundation has awarded twelve million dollars for MPN research. More information may be obtained at http://www.mpnresearchfoundation.org/myMPN or by contacting us at mwoehrle@mpnrf.org or 312-683-7243.

MPN Research Foundation remains committed to a portfolio of research funding that includes an annual Request for Proposals for new scientific ideas of how to help patients with PV, ET and MF, as well as strategic research initiatives focused on areas of unmet need that could prove fruitful for improving the quality and/or length of life for MPN patients. You are invited to learn more at http://www.mpnresearchfoundation.org.

About NCCN Foundation
New Patient Guidelines from the National Comprehensive Cancer Network Offer Much-Needed Clarity around a Group of Rare Blood Cancers NCCN Foundation® was founded by the National Comprehensive Cancer Network® (NCCN®) to empower people with cancer and advance oncology innovation. NCCN Foundation supports people with cancer and their caregivers at every step of their treatment journey by delivering unbiased expert guidance from the world’s leading cancer experts through the library of NCCN Guidelines for Patients® and other patient education resources. NCCN Foundation is also committed to advancing cancer treatment by funding the nation’s promising young investigators at the forefront of cancer research, initiating momentum in their careers and furthering the
betterment of patients through their groundbreaking innovations. For more information about NCCN Foundation, visit http://www.nccnfoundation.org. 

About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. As the arbiter of high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. 

The NCCN Member Institutions are: Fred & Pamela Buffett Cancer Center, Omaha, NE; Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute, Cleveland, OH; City of Hope Comprehensive Cancer Center, Los Angeles, CA; Dana-Farber/Brigham and Women’s Cancer Center | Massachusetts General Hospital Cancer Center, Boston, MA; Duke Cancer Institute, Durham, NC; Fox Chase Cancer Center, Philadelphia, PA; Huntsman Cancer Institute at the University of Utah, Salt Lake City,
UT; Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD; Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL; Mayo Clinic Cancer Center, Phoenix/Scottsdale, AZ, Jacksonville, FL, and Rochester, MN; Memorial Sloan Kettering Cancer Center, New York, NY; Moffitt Cancer Center, Tampa, FL; The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus,
OH; Roswell Park Cancer Institute, Buffalo, NY; Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO; St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN; Stanford Cancer Institute, Stanford, CA; University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; UC San Diego Moores Cancer Center, La Jolla, CA; UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA; University of Colorado Cancer Center, Aurora, CO; University of Michigan Comprehensive Cancer Center, Ann Arbor, MI; The University of Texas MD Anderson Cancer Center, Houston, TX; University of Wisconsin Carbone Cancer Center, Madison, WI; Vanderbilt-Ingram Cancer Center, Nashville, TN; and Yale Cancer Center/Smilow Cancer Hospital, New Haven, CT. Clinicians, visit NCCN.org. Patients and caregivers, visit NCCN.org/patients. Media, visit NCCN.org/news. Follow NCCN on Twitter @NCCNnews and Facebook @National.Comprehensive.Cancer.Network.

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