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MDS Patient & Family Report
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MDS Patient & Family Report

Author: MDS Foundation

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This new initiative of the MDS Foundation is devoted to patients, family members, and other non-professional interested people. In each episode, experts in the field will discuss novel information on MDS, such as new diagnostic techniques, new therapies etc. They will also answer frequently asked questions, which are relevant to many people.
9 Episodes
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MDS experts Drs Nikolaos Papadantonakis of Emory, Atlanta, US, and Moshe Mittelman, Tel-Aviv, Israel, discuss new trials presented in the last meeting of the American Society of Hematology (ASH) 2023. They focus on luspatercept, imetelstat and roxodustat.
Mrs. Iris Yahal, founder and director of MDS Israel Support Group (Israel MDS Foundation), discusses with Dr. Moshe Mittelman of Tel-Aviv, an MDS expert, several issues that are within the interest of MDS patients and families, including issues related to quality of life and the participation in clinical trials.
In this part I of the frequently asked questions episode, Mrs. Iris Yahal, the founder and director of the MDS Israel Support Group (Israel MDS foundation), asks and discusses with Dr. Mittelman, of Tel-Aviv, several topics that are within the interest of patients and families. The questions of MDS as an inherited disease or as a cancer, as well as issues related to patient-physician relationship, are discussed.
Moshe Mittelman, Professor of Medicine and Hematology from Tel-Aviv and chairman, the scientific board of MDS Foundation, interviews Mrs. Noa Goldschmidt, Chief Study Coordinator in Tel-Aviv Sourasky Medical Center, about clinical trials from the perspective of patients and families. They discuss several issues, include the three phases of trial, why the patients benefit from trials and other important points.
In this episode of the MDS-Foundation Podcast Projects – The Patient and FamiliesProgram, Dr. Moshe Mittelman, Chief MDS Center of Excellence, Tel Aviv Sourasky(Ichilov) Medical Center, Tel-Aviv, and Mrs. Noa Goldshmidt, Chief Study Coordinatorat TASMC, discussing various issues related to clinical trials. The episode is directedto MDS patients, their families, and all interested parties, with a special focus onclinical trials for MDS patients. Among other topics, they explain what clinical trialsare, why they are so important, they describe the stages and process of clinicaltrials, and explain why patients can benefit from participation in trials. Finally, theyemphasize that patient safety is the prior interest and is highly maintained, andprovide some interesting real-world examples.
Prof. Rena Buckstein from Toronto, and Prof. Moshe Mittelman from Tel-Aviv discuss the role of blood transfusions and issues related to quality of life in patients with myelodysplastic syndromes (MDS), including reviewing the recent research in the field.
Prof. Akiko Shimamura of Harvard Medical School, Boston, a world known expert of pediatric hematology discusses with Prof. Guillermo Sanz ,of Valencia and Prof. Moshe Mittelman, of Tel Aviv, the various aspects of bone marrow failure including childhood MDS, the differences of this medical problem between adults and children, the unique approach to sick kids and the increasing number of promising therapeutic options
Drs. Rafael Bejar (San Diego) and Moshe Mittelman (Tel Aviv) discuss the trend towards adjusting the appropriate treatment to the particular MDS patient, a trend that is associated with higher rate of successful treatments and less toxicity. They also address several frequently asked questions.
The first episode of this program, brings a conversation between Prof. Guillermo Sanz from Valencia and Prof. Moshe Mittelman from Tel Aviv, on several issues relevant for patients, families and other stakeholders interested in myelodysplastic syndromes. First, they discuss the introduction of genetic tests into clinical practice of MDS. These tests found, for example, that at least a third of MDS patients with the TP53 mutation, do not (!) suffer from poor prognosis as previously thought. The new classification that will include genetic testing and will allow more accurate diagnosis leading to more appropriate treatment. They then answer frequently asked questions: 1) MDS might be considered as cancer, but more important is the progress towards chronicity of the disease allowing many patients prolonged life expectancy with good quality of life. 2) In a reply to another common question: MDS is basically not an inherited disease ! In >90-95%, the disease is acquired.
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