| 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.
 MAKE
A DONATION NOW.
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).
--Patient “Statement of Principles” to
be Unveiled at the Global ASCO Cancer Meeting in Orlando, Florida--
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.
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.
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.
 |
By Jason Gotlib, MD, MS & Lenn Fetcher, RN, BSN
Now available from the Foundation.
For your copy please call 1-800-MDS-0839 |
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
VIDAZA Restores Gene Function to Double
Survival and Increase Transfusion Independence
Click
here to view the press release
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.
Click
here to view the press release
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.
Click
here for more details
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.
Click
here to view the active sites
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.
Click
here to view the complete article
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.
Click
here to view the complete article
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).
Click
here to view the complete article
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.
Click
here to view the complete article
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.
Click
here to view the complete article
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.
Click
here to read complete press release
Revised Class Labeling and Data on Increased Transfusions are
Part of the Growing New Evidence to Revise the Policy
Click
here to read complete press release
Vidaza Can Help
Patients Throughout Europe Live Longer with a Better Quality
of Life
Click
here to read complete press release
Results from Clinical
Trial Found that VIDAZA is the Only Agent to
Extend Survival in
Patients with Higher-Risk Myelodysplastic Syndromes
Click
here to read complete press release
A Phase II Study
of Efficacy of Rabbit Anti-thymocyte Globulin (rATG) in Patients
with
Low and Intermediate-1 Risk Myelodysplastic Syndrome
Click
here to read complete press release
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.
- 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
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
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
Click
here for the Physician print survey
Click
here to complete the Physician survey online
    
Click on a flag to take the Nursing Pratice & Treatment
survey in your language
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
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
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