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Newsstand

Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

Health Professionals Update - Spring 2016

Originally Published: 04/30/2016
Shared Decision-Making and Communication Strategies for MDS Patients For nurses and nurse practitioners in hematology/oncology, oncology or primary care settings, this new module provides a comprehensive review of shared decision making and communication strategies to improve treatment goals for patients with myelodysplastic syndromes including: Shared decision making Patient-centered communication Clinical decision support Communication skills for health care providers Learn more about AAMDSIF Nursing Modules.

Foundation Update - April 2016

Originally Published: 04/15/2016
Foundation Update Newsletter - April 2016   2016 AAMDSIF Scientific Symposium: Experts Debate and Discuss the State of Research and Treatment “This symposium was the best one yet – we’re lucky to have these wonderful presentations and discussions, and to leave with lots of ideas and possibilities for new work and collaboration.”  -- Neal Young, MD, National Heart, Lung and Blood Institute, National Institutes of Health On March 17-18, over 100 leading researchers and clinicians attended the 5th International Bone Marrow Failure...

Aplastic Anemia Research Summary from ASH 2015

Originally Published: 01/01/2016
A summary of selected scientific abstracts from the 2015 American Society of Hematology Annual Meeting. Read the abstracts for aplastic anemia.

MDS Research Summary from ASH 2015

Originally Published: 01/01/2016
A summary of selected scientific abstracts from the 2015 American Society of Hematology Annual Meeting. Read the abstracts for MDS.

PNH Research Summary from ASH 2015

Originally Published: 01/01/2016
A summary of selected scientific abstracts from the 2015 American Society of Hematology Annual Meeting. Read the abstracts for PNH.

Advances in the molecular pathology of MDS

Originally Published: 11/19/2015
Stephanie Halene, M.D. Assistant Professor Section of Hematology/Department of Internal Medicine and Yale Cancer Center And Kai Rejeski, Visiting Medical Student, Freiburg University Yale University School of Medicine Molecular pathology of myelodysplastic syndromes: new developments and implications for diagnosis and treatment. Zhang X, Lancet JE, Zhang L. Leuk Lymphoma. 2015 May 26:1-9. [Epub ahead of print]Current and novel therapeutic approaches in myelodysplastic syndromes. Estephan F, Tiu RV. J Community Support Oncol. 2014 Jul;12(7):236-249. doi: 10.12788/jcso.0057. Review. PMID:...

Options for MDS patients beyond HMAs

Originally Published: 11/19/2015
Stephanie Halene, M.D. Assistant Professor Section of Hematology/Department of Internal Medicine and Yale Cancer Center And Edo Kapetanovic, Visiting Medical Student, University of Rijeka, Croatia Yale University School of Medicine In this article, Roberts and Steensma explore the critical question of what to do for those patients with myelodysplasia (MDS) who fail hypomethylating agents (HMAs) either upfront or after a period of response. HMAs, azacytidine and decitabine, were approved for International Prognostic Scoring System (IPSS) intermediate-2 and high-risk MDS in 2004 and 2006,...

Personalized medicine for MDS

Originally Published: 11/19/2015
Research Review: Myelodysplastic syndromes (MDS) are a complex, heterogeneous disorder of the bone marrow.  The disease behaves in a wide spectrum, manifesting in an indolent manner in some patients as opposed to aggressively in others.  Therefore, treatment decisions have to be tailored to the individual patient.  Age and concurrent medical problems also play a role in determining therapy. Key-Findings: -The International Prognostic Scoring System (IPSS) helps to risk stratify MDS patients into “lower-risk” disease, where improvement in blood counts is the main goal of therapy, and “higher-...

EHA S826: Eltrombopag Added to Standard Immunosuppression as First Treatment in Severe Aplastic Anemia

Originally Published: 10/16/2015
Danielle Townsley, Bogdan Dumitriu, Phillip Scheinberg, Ronan Desmond, Xingmin Feng, Olga Rios, Barbara Weinstein,Janet Valdez, Thomas Winkler, Keyvan Keyvanfar, Stephanie Sellers, Marie Desierto, Sanaz Soltani, Harshraj Leuva, Swetha Valluri,Colin Wu, Katherine Calvo, Andre Larochelle, Cynthia Dunbar, Neal Young The standard first treatment for aplastic anemia is immunosuppressive treatment. This treatment improves blood cell counts in about 60% to 65% of patients with severe aplastic anemia. But blood counts return to normal (known as a complete response) in only about 10% of these...

Incidence and Burden of the Myelodysplastic Syndromes

Originally Published: 10/14/2015
The incidence of myelodysplastic syndromes (MDS) has been underestimated in population based registries due to lack of reporting and under-diagnosis.  Using Medicare databases, the incidence in patients 65 years or older is estimated to be between 75 and 162 per 100,000 and growing.  There are several unmet needs in this patient population, including patients not receiving therapies to potentially reduce transfusion needs and lack of treatment options for patients who fail standard therapy.  In addition, older MDS patients are not always given the opportunity to participate in shared...