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US Patient Liaison: Audrey Hassan • Patientliaison@mds-foundation.org • P.O. Box 353, Crosswicks, NJ 08515
Phone: 1-800-MDS-0839, outside the US only: 609-298-6746 • Fax: 1-609-298-0590
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EU Patient Liaison: Sophie WintrichEUPatientLiaison@mds-foundation.org
The Rayne Institute, Denmark Hill Campus, 123 Coldharbour Lane London SE5 9NU, UK Tel: +44 20 7733 7558

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The MDS Foundation is a multi disciplinary, international organization devoted to the prevention, treatment, and study of the myelodysplastic syndromes. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.

If you wish to support the work of the Foundation in the battle against myelodysplastic syndromes, please remember us and consider donating all year long. All donations are tax-deductible.

redarrow MAKE A DONATION NOW.

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Young Investigator Grants Announcement 2009
Please note that we have extended the deadline for the Letters of Intent to August 1st, based on the influx of meetings surround our deadline.

The Foundation is dedicated to furthering the research into MDS and invites young investigators (under 40 years of age) from institutions that form our MDS Centers of Excellence to submit their proposals for either basic research or clinical management into the causation, epidemiology, molecular biology, cytogenetics, morphology, prognosis and management of the Myelodysplastic Syndromes. The initial awards are set at $50,000 over 2 years [$25,000 in Year 1; $25,000 in Year 2]. Two awards will be announced this year for the years of 2010-2011. Subsequent awards will be announced for 2011 and beyond.

All MDS Centers of Excellence are invited to nominate one candidate from their institution. A mandatory brief letter of intent (L.O.I.) is to be submitted no later than August 1st, 2009. The L.O.I. should contain a brief paragraph describing the background of the candidate and 1-2 paragraphs describing the proposed project and the name of the mentor. A formal application will be sent to you shortly after receipt of the L.O.I. and will be due no later than September 18, 2009.

To submit a L.O.I. or for more information please contact ahassan@mds-foundation.org or call 1-800-MDS-0839 (within the US) or 609-298-6746 (outside the US).

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THE INTERNATIONAL MYELOMA FOUNDATION, THE MDS FOUNDATION AND A COALITION OF PATIENT ADVOCACY ORGANIZATIONS CALL FOR UPDATED RULES FOR REIMBURSEMENT, ACCESS AND APPROVALS FOR NEW AND EXISTING CANCER TREATMENTS

--Patient “Statement of Principles” to be Unveiled at the Global ASCO Cancer Meeting in Orlando, Florida--

redarrow To read more click here

Healthcare policy makers are meeting in the nation’s capital and around the country to discuss health care reform, and the need to provide appropriate care, including preventive care, for all those who need it.  Recently, at the largest meeting of oncology doctors, the 45th Annual Meeting of the American Society for Clinical Oncology (ASCO), one of the key themes was the impact of financial issues on the use of cancer therapies, including issues of cost, access, reimbursement and how they affect compliance.

There is a vast inequity of access to and reimbursement for cancer medications. Every cancer patient is unique and a treatment that works for one patient may not work for another. Patients should have access to the treatments that are recommended by their physician and equally reimbursed regardless of the type of therapy or the mechanism of delivery.

On behalf of the MDS Foundation and other blood cancer groups, including the International Myeloma Foundation and the Tackle Myeloma Foundation, we propose the following principles to advance access to treatments while reducing healthcare costs, improving prevention, and encouraging innovation.  Please join us in our efforts by signing the petition. This petition will be sent to key healthcare policy makers in the hopes of encouraging legislation that moves these important principles forward.

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THE CANCER PATIENT STATEMENT OF PRINCIPLES:
Prevention, Innovation, Access, and Early Approvals

redarrow Please show your support by signing the petition

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Your Help is Needed for Important Research Investigating the Genetics of Familial MDS/AML

If you or anyone you know has a familial history of MDS/AML please contact us at 1-800-MDS-0839 or email patientliaison@mds-foundation.org. While this is extremely rare, there is an ongoing study and we are trying to help locate these rare cases. Thank you.

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Next MDS U.S. Patient-Caregiver Forum:

Saturday, July 11th, 2009
Omni Chicago Hotel
Guest Speaker: Dr. Lucy Godley, University of Chicago

Call 1-800-MDS-0839 or email dmurray@mds-foundation.org to register for this free event.

Wednesday, July 15th, 2009
Philadelphia Marriott Downtown
Guest Speakers: Drs. Emmanuel Besa and Margaret Kasner, Thomas Jefferson University, Kimmel Cancer Center

Call 1-800-MDS-0839 or email dmurray@mds-foundation.org to register for this free event.

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100 Questions about MDS

100 Questions & Answers About Myelodysplastic Syndromes
By Jason Gotlib, MD, MS & Lenn Fetcher, RN, BSN

Now available from the Foundation.
For your copy please call 1-800-MDS-0839

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Daily Discussions with Global Key Opinion Leaders on Emerging Trends in the Treatment of MDS
Direct from the 10th International Symposium on Myelodysplastic Syndromes in Patras, Greece
Available each day of the conference beginning May 6th

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PUBLISHED DATA CONFIRMS VIDAZA® SIGNIFICANTLY EXTENDS
SURVIVAL IN PATIENTS WITH THE MALIGNANT CONDITION MDS

VIDAZA Restores Gene Function to Double Survival and Increase Transfusion Independence

redarrow Click here to view the press release

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2009 Signature Genomic Laboratories Travel Award Winner Announced

Bethesda, MD – April 2, 2009 – Kathy M. Chun, PhD, FCCMG, FACMG was honored as the 2009 recipient of the Signature Genomic Laboratories Travel Award at the American College of Medical Genetics (ACMG) 2009 Annual Clinical Genetics Meeting in Tampa, Florida. Dr. Chun is Director, Cytogenetics and Molecular Genetics at the North York General Hospital in Toronto, Canada and an Assistant Professor at the University of Toronto.

redarrow Click here to view the press release

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JMML Foundation Announces $30,000 Research Grant Award

The JMML Foundation is offering a $30,000 research award to support work toward a cure for juvenile myelomonocytic leukemia. The one-year award is geared toward investigators in academic settings whose research is directly relevant to JMML diagnosis, MRD monitoring, treatment or disease mechanism.

redarrow Click here for more details

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Announcing New Amgen Global Phase 2 MDS Study

Amgen. Protocol 20060198: Phase 2, multicenter, randomized, double blind, placebo controlled study designed to assess the efficacy and safety of romiplostim (formerly, AMG 531) treatment in thrombocytopenic MDS subjects. The study is composed of a 26-week placebo controlled test treatment period (romiplostim versus Placebo), a 2 to 4 week interim wash-out period, a 24-week placebo controlled extended treatment period, and a 4-week follow-up period. During the interim wash-out period, a bone marrow biopsy will be performed in the absence of growth factor to assess changes in the marrow. In the extended treatment period, safety assessments will continue and subjects will be allowed to receive any standard of care treatments for MDS. Contact the Amgen Call Center at 866-572-6436.

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A CRITICAL NEW CLINICAL TRIAL

The MDS Foundation is active in supporting MDS patients including maintenance of access to therapy with erythropoietin-stimulating agents (ESAs). Johnson & Johnson Pharmaceutical Research and Development (J&JPRD) has structured the EPOANE3018 protocol with input from the FDA to demonstrate the benefit and safety of epoetin alfa treatment in MDS patients.

Research to date suggests that epoetin alfa is effective in reducing the need for red blood cell transfusions in patients with early stages of MDS. The purpose of this study is to explore whether it will decrease the need for blood transfusions and increase the hemoglobin level in patients with early stage MDS and anemia. While the Centers for Medicare and Medicaid Services (CMS) did not make MDS a part of their original decision due to the ‘definition’ that MDS is not cancer, the Foundation strongly feels that this will not be the case in the long term.
Many MDS patients rely on ESAs for the management of their disease. This trial will play an important part in decisions that will determine the future treatments for MDS patients. The use of this supportive and comprehensive data can then serve to have a positive influence over future decisions by CMS or to possibly change the labeling for ESAs to include approval for use in bone marrow failure diseases by the FDA.

redarrow Click here to view the complete article

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chemgenex FDA GRANTS ORPHAN DRUG DESIGNATION TO CHEMGENEX’S OMACETAXINE FOR THE TREATMENT OF MYELODYSPLASTIC SYNDROMES

MELBOURNE, Australia, and MENLO PARK, California U.S.A. (January 20, 2009). ChemGenex Pharmaceuticals Limited (ASX:CXS and NASDAQ:CXSP) announced that the United States Food and Drug Administration (FDA) has granted Orphan Drug designation to omacetaxine for the treatment of Myelodysplastic Syndromes (MDS).

Orphan drug designation is intended to support the clinical development of new drugs in diseases affecting less than 200,000 people in the United States. The FDA often provides technical and financial assistance to expedite and optimize drug development and on approval, grants a seven year period of market exclusivity.

redarrow Click here to view the complete article

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EISAI WILL INITIATE FIRST HEAD-TO-HEAD STUDY COMPARING DACOGEN® (DECITABINE FOR INJECTION) AND VIDAZA® (AZACITIDINE) IN PATIENTS WITH MYELODYSPLASTIC SYNDROMES
Randomized Comparator Study to Evaluate Efficacy of Commercially Available Hypomethylating Agents

Eisai Corporation of North America today announced that it plans to initiate the first clinical trial evaluating the activity of Dacogen® (decitabine for injection) compared to Vidaza® (azacitidine) in adult patients with intermediate-1, intermediate-2 or high-risk myelodysplastic syndromes (MDS), a potentially life-threatening group of bone marrow diseases that limit the production of functional blood cells. The head-to-head trial will be conducted in the United States and will directly compare Dacogen® to Vidaza® with a primary endpoint of complete response rate (including marrow complete response).

redarrow Click here to view the complete article

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DACOGEN® (DECITABINE FOR INJECTION) DATA PRESENTED ON A PHASE II CLINICAL TRIAL IN ELDERLY PATIENTS WITH ACUTE MYELOID LEUKEMIA (AML)
Response Observed Across All Subtypes of AML, Including Those with Poorest Prognoses

San Francisco, CA, December 8, 2008 – Eisai Corporation of North America announced data from a Phase II trial evaluating a five-day dosing regimen of Dacogen®(decitabine for injection) in acute myeloid leukemia (AML), the most common form of leukemia. The study involved elderly patients with AML, who often have limited options due to comorbidities and are typically considered ineligible for standard induction chemotherapy. These data were presented today at the American Society of Hematology (ASH) 50th Annual Meeting.

Dacogen®is indicated for treatment of patients with myelodysplastic syndromes (MDS), including those with refractory anemia with excess blasts (immature or unformed blood cells) in transformation (RAEB-T - now re-classified by World Health Organization [WHO] as AML). Phase II and III clinical trials evaluating Dacogen®in patients with AML are currently underway.

redarrow Click here to view the complete article

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DATA PRESENTED AT ASH ILLUSTRATES THAT
CONTINUED TREATMENT WITH VIDAZA CAN BENEFIT MDS PATIENTS

The Myelodysplastic Syndromes (MDS) Foundation announced today that a new analysis of the AZA-001 phase III clinical trial demonstrates that continued treatment with VIDAZA (azacitidine) can improve response rates for higher-risk MDS patients.

Leading hematologist Dr. Lewis Silverman of Mount Sinai Medical Center presented the analysis at the 50th Annual Meeting of the American Society of Hematology. The results showed that 51% of patients in the trial responded to treatment with Vidaza. Of those patients, almost half achieved an improved response when treatment with VIDAZA was continued for an additional four cycles.

redarrow Click here to view the complete article

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Exjade® benefits chronically transfused patients by significantly reducing toxic iron that can damage key organs, according to landmark trial

East Hanover, NJ, December 8, 2008 — New data from the largest prospective trial in iron chelation demonstrate the efficacy and safety of Exjade® (deferasirox) in treating chronic transfusional iron overload, a potentially life-threatening condition for patients who have had multiple blood transfusions to treat underlying anemias, including beta-thalassemia and myelodysplastic syndromes (MDS).

The EPIC cardiac substudy showed that Exjade removed iron from the heart in beta-thalassemia patients, based on a statistically significant improvement in T2* magnetic resonance imaging, a validated technique to assess cardiac iron content (P<0.0001).  The one-year substudy included 114 beta-thalassemia patients with cardiac iron overload, the leading cause of death in these patients.

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AMGEN TO PROVIDE NEW EVIDENCE AS PART OF A FORMAL RECONSIDERATION
OF CMS’ NATIONAL COVERAGE DETERMINATION ON ESAs

Revised Class Labeling and Data on Increased Transfusions are Part of the Growing New Evidence to Revise the Policy

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THE MDS FOUNDATION SUPPORTS VIDAZA’S RECOMMENDATION FOR EUROPEAN APPROVAL

Vidaza Can Help Patients Throughout Europe Live Longer with a Better Quality of Life

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THE MDS FOUNDATION SUPPORTS THE FDA’S DECISION TO
EXPAND VIDAZA LABEL TO INCLUDE OVERALL SURVIVAL DATA

Results from Clinical Trial Found that VIDAZA is the Only Agent to
Extend Survival in Patients with Higher-Risk Myelodysplastic Syndromes

arrow Click here to read complete press release

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Genzyme Corporation is conducting a global phase 2 study to further understand
the effect Rabbit Antithymocyte Globulin (rATG) has on MDS.

A Phase II Study of Efficacy of Rabbit Anti-thymocyte Globulin (rATG) in Patients with
Low and Intermediate-1 Risk Myelodysplastic Syndrome

arrow Click here to read complete press release

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FDA APPROVES NPLATE™ FOR LONG-TERM
TREATMENT OF ADULT CHRONIC ITP

First and Only Approved Platelet Producer Represents New Treatment Approach for Serious Chronic Autoimmune Disorder

Amgen to Launch Nplate™ NEXUS Program to Provide Treatment Access and Patient Support Programs
THOUSAND OAKS, Calif., (August 22, 2008) – Amgen Inc. (NASDAQ: AMGN) today announced that the United States (U.S.) Food and Drug Administration (FDA) has approved Nplate™ (romiplostim), the first and only platelet producer for the treatment of thrombocytopenia in splenectomized (spleen removed) and non-splenectomized adults with chronic immune thrombocytopenic purpura (ITP). Nplate, the first FDA-approved peptibody protein, works by raising and sustaining platelet counts, representing a novel approach for the long-term treatment of this chronic disease.

Click here for the full media details. arrow

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Virtual Microscopy in MDS-AML:
The Key to Enhancing Classification

This CME Accredited Program is now available!

Click here to view the program arrow

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Once-Daily Exjade® Shown to Remove Iron From the Heart, According to Data Presented at ASH

  • Approximately 78% of beta-thalassemia patients had decreases in cardiac iron and 90% had decreases in liver iron after six months, interim data show
  • Study in sickle cell disease (SCD) patients with iron overload showed continued safety and efficacy over two years
  • Safety and efficacy demonstrated in lower-risk myelodysplastic syndromes (MDS) patients

Click here for complete media release arrow

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Epigenetics: Playing the Genetic Score

Epigenetics is challenging long-held notions that our genes are our destiny and radically changing the way researchers think about the development of certain illnesses. As science come to understand the way epigenetic processes silence genes, it is given rise to promising new therapies for diseases such as MDS.

Watch The Journal of Life Sciences webcast arrow

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MDS Practice and Treatment Survey

The MDS Foundation recognizes that data on many aspects of MDS worldwide is sketchy or nonexistent. While individual investigators have developed databases to track MDS within their individual sites or working groups, that information is not located within one easily accessible database.

To assist in the development of useful information, The Foundation has recently initiated the first Patient Registry and data from the Foundation’s Centers of Excellence are currently being entered.

Since it will be some time before these data are mature and usable, The Foundation has attempted to design a survey that we hope will assist in describing some of the issues related to MDS worldwide as well as the treatments being utilized in this disease. A pilot of this survey has already been completed with some selected Centers of Excellence. While we know that this information is, in most instances, based on subjective criteria it can assist in identifying educational and research opportunities in the near term and until more accurate data is available.

The results of this expanded survey will be shared with each of our Centers of Excellence and used by the Foundation to assess new educational and research opportunities. Thank you in advance for your consideration in completing this form.

Click here for the Nursing Practice & Treatment print survey arrow

Click here for the Physician print survey arrow

Click here to complete the Physician survey online arrow

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Click on a flag to take the Nursing Pratice & Treatment survey in your language

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Pharmion Corporation Announces FDA Approval of Vidaza NDA
Supplement for IV Administration

Vidaza is the only approved DNA demethylation agent with Labeled IV administration of less than one hour. With this approval, Vidaza may now be administered intravenously over a period of 10 to 40 minutes in a clinic or hospital setting.

Click here for more information

Announcing DACO-016 AML Study

Very few treatment options are available for older patients with acute myeloid leukemia (AML). As the population ages, there appears to be an increasing incidence of AML in those patients over 65 years. MGI PHARMA is sponsoring a worldwide study evaluating the efficacy of Dacogen in patients older than 65 years with AML. Dacogen was approved by the FDA in May 2006 for the treatment of myelodysplastic syndromes. Dacogen has a unique mechanism of action in that it works as a hypomethylating agent rather than as a chemotherapeutic agent.  This may allow for less toxic treatment of AML compared to standard chemotherapy.

Click here for more information

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Insurance and Reimbursement Resources for MDS Patients in the USA

We have assembled a listing of assistance programs available to MDS patients. It is important to know that there is support for those who cannot afford medicine or other healthcare costs. Click on the item of interest below for more information or click here to request an Insurance and Reimbursement Booklet. We hope this new resource will be beneficial in helping you with your medical needs.

Ask about iron is an education program for those at most risk for iron overload disease due to blood transfusions.

Click here for more information

MDS FOUNDATION RESOURCE CENTER
Understanding The Myelodysplastic Syndromes

Visit This New Resource for Healthcare Professionals

Understanding MDS: A Primer for Practicing Clinicians

Segment 1, The Past & Present in MDS is available free of charge. This segment introduces the group of bone marrow disorders called MDS and provides a history of myelodysplastic syndromes up to the present time.

Segment 2, Clinical Presentation, Diagnosis, and Pathology is available free of charge. This segment provides an insightful overview of the clinical picture of adult and pediatric patients with primary or secondary MDS. Diagnosing MDS based on morphologic, cytogenetic, and pathologic criteria are also discussed.

Segment 3, Ineffective Hematopoiesis: Considerations in Diagnosis and Treatment is available free of charge. This segment provides insight into the pathogenic mechanisms that contribute to the development of MDS, including the altered bone marrow microenvironment of MDS in terms of cells, cytokines, growth factors, receptors, and microvasculature; dyserythropoiesis in MDS, and therapeutic targets and approved drugs for the treatment of MDS.

Segment 4, Anemia in MDS: Survival, QoL, and Treatment Options
Segment 4 is an overview of supportive care with a focus on RBC transfusions and its effect on the morbidity and mortality of MDS patients. This segment also looks at the quality of life issues from the perspectives of the physical, functional, emotional, social and cost impacts on the patient with MDS.

This multi-segment program is available in the following languages: English, French, German, Italian, Japanese and Spanish.

Click here to register

Please participate in the Quality-of-life Survey

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