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NCCN Publishes New Patient Education Resources about Myelodysplastic Syndromes

New NCCN Guidelines for Patients® and NCCN Quick Guide™ series outline disease basics, testing, and treatment information about MDS so patients can make well-informed decisions about their cancer care.

FORT WASHINGTON, PA — Myelodysplastic syndromes (MDS) are the result of genetic alterations that cause blood stem cells to become abnormal, rendering bone marrow unable to create new, mature blood cells for release into the body. It is estimated that up to 15,000 new cases of MDS are diagnosed in the United States each year and that up to 75,000 Americans are living with MDS.i

To provide insight on MDS for patients and caregivers, the National Comprehensive Cancer Network® (NCCN®) has published the NCCN Guidelines for Patients® and NCCN Quick Guide™ for MDS. These resources are provided through funding from the NCCN Foundation® and, in part, through generous sponsorship from the Aplastic Anemia and MDS International Foundation (AAMDSIF).

“NCCN Foundation thanks the Aplastic Anemia and MDS International Foundation for their generous sponsorship of the NCCN Guidelines for Patients: MDS,” said Marcie R. Reeder, MPH, Executive Director, NCCN Foundation. “Access to these new, easy-to-understand resources empowers patients to ask important questions and make well-informed decisions about their cancer care.”

“We are grateful for the opportunity to partner with NCCN to develop this valuable patient resource,” said Kathleen Weis, CEO of AAMDSIF. “Education has always been a key component of our mission, and we are proud to have contributed to the creation of these important guidelines for MDS patients and their families.”

NCCN Guidelines for Patients, patient-friendly translations of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), are easy-to-understand resources based on the same clinical practice guidelines used by health care professionals around the world to determine the best way to treat a patient with cancer. Each resource features unbiased expert guidance from the nation’s leading cancer centers designed to help people living with cancer talk with their physicians about the best treatment options for their disease. These resources are available free of charge at NCCN.org/patientguidelines. Print versions are available to order on Amazon.com.

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 elements, such as questions to ask your doctor, a glossary of terms, and medical illustrations of anatomy, tests, and treatments. NCCN Guidelines for Patients and NCCN Quick Guide™ sheets DO NOT replace the expertise and clinical judgment of the clinician.

NCCN currently offers NCCN Guidelines for Patients for the following:  Breast, Colon, Esophageal, Kidney, Non-Small Cell Lung, Ovarian, Pancreatic, and Prostate Cancers; Acute Lymphocytic Leukemia (ALL); Caring for Adolescents and Young Adults; Chronic Lymphocytic Leukemia (CLL); Chronic Myelogenous Leukemia (CML); Hodgkin Lymphoma; Lung Cancer Screening; Malignant Pleural Mesothelioma; MDS; Melanoma; Multiple Myeloma; Non-Hodgkin’s Lymphomas; and Soft Tissue Sarcoma.

To download the NCCN Guidelines for Patients and NCCN Quick Guide™ for MDS, visit NCCN.org/patientguidelines.

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About NCCN Foundation
Through philanthropy, the NCCN Foundation® empowers people through knowledge and advances the mission of NCCN to improve the quality, effectiveness, and efficiency of cancer care, so that patients can live better lives. Visit NCCNFoundation.org.

About Aplastic Anemia and MDS International Foundation
AAMDSIF is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases. It also funds scientific research and provides health professionals, patients and families with free educational programs. www.aamds.org


iMyelodysplastic Syndromes (MDS). AAMDSIF Home. http://www.aamds.org/diseases/mds. Accessed June 20, 2016.

About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 27 leading cancer centers, is dedicated to improving the quality and effectiveness of care provided to patients with cancer. 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 primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives. For more information, visit NCCN.org.

The NCCN Member Institutions are:

  • Abramson Cancer Center at the University of Pennsylvania
  • Fred & Pamela Buffett Cancer Center
  • Case Comprehensive Cancer Center/University Hospitals Seidman Cancer Center and Cleveland Clinic Taussig Cancer Institute
  • City of Hope National Medical Center
  • Dana-Farber/Brigham and Women's Cancer Center | Massachusetts General Hospital Cancer Center
  • Duke Cancer Institute
  • Fox Chase Cancer Center
  • Huntsman Cancer Institute at the University of Utah
  • Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance
  • The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins
  • Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Mayo Clinic Cancer Center
  • Memorial Sloan Kettering Cancer Center
  • Moffitt Cancer Center
  • The Ohio State University Comprehensive Cancer Center - James Cancer Hospital and Solove Research Institute
  • Roswell Park Comprehensive Cancer Center
  • Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine
  • St. Jude Children's Research Hospital/The University of Tennessee Health Science Center
  • Stanford Cancer Institute
  • University of Alabama at Birmingham Comprehensive Cancer Center
  • UC San Diego Moores Cancer Center
  • UCSF Helen Diller Family Comprehensive Cancer Center
  • University of Colorado Cancer Center
  • University of Michigan Rogel Cancer Center
  • The University of Texas MD Anderson Cancer Center
  • University of Wisconsin Carbone Cancer Center
  • Vanderbilt-Ingram Cancer Center
  • Yale Cancer Center/Smilow Cancer Hospital