Research FOR Patients

We aim to present an easily understandable version of the latest medical research on MDS

Learn about the latest research projects and use this information to discuss with your consultants or nurses: when you are actively involved in your own care, treatment and support, it can improve your outcomes and experience of the disease.

All the articles listed in this page have been properly vetted for scientific accuracy.

Watch also our Video Interviews with MDS Experts and read more on the MDS Clinical Trials currently recruiting in the UK.

The European MDS Registry: learning about the ‘real’ MDS patients

Research FOR PatientsFor an informed and empowered opinionand an improved consultationHave you made your clinical paper accessible yet? By Prof. David Bowen In order to develop new drugs to treat MDS, clinical trials are mandatory, typically testing the new drug against the treatment that is considered to be the standard at that time. However patients […]

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EPO (Erythropoietin) & other Erythropoiesis Stimulating Agents (ESAs) in the Treatment of MDS

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Print this article In this article Dr Chris Dalley, Consultant Haematologist University Hospital Southampton (NHS Foundation Trust), looks at the use of conventional and new Erythropoiesis Stimulating Agents (ESAs) in the treatment of MDS. What are Erythropoiesis Stimulating […]

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When is the right time to give a blood transfusion?

When the blood lacks enough healthy red blood cells or haemoglobin, anemia symptoms develop, typically fatigue, shortness of breath, weight loss, paler than normal skin, etc and a blood transfusion is considered. There is no set haemoglobin level at which a blood transfusion is given, but your doctor will assess your symptoms and you will […]

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The RIGHT treatment for the right patient at the right time – a crucial EU initiative

More than 70 participants representing medical specialists and nurses caring for MDS patients, MDS patient advocates, medical researchers and data managers, healthcare authorities, regulators, HTA experts and industry representatives gathered for the first MDS-RIGHT multi-stakeholder meeting on the 3 May 2017 in Valencia, Spain – in conjunction with the biannual MDS 2017 International Symposium. This project […]

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Can Azacitidine be administered at home? The Spanish experience

A new project was trialled for more than two years by nurses from home-care units in Spain: ‘Azacitidine (Vidaza) administration at home’. Now it has been rolled out to include most of the hospitals in Spain administering Azacitidine. It was initially undertaken by nurses, not necessarily haematology nurses, who would visit patients at home usually by taxi […]

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Watch the videos from the UK MDS Forum Education Day 2016

The following videos come from the annual UK MDS Forum Education Day 2016, which took place in London on 11th November 2016. The day is targeted at all haematologists in the UK and Ireland who deal with MDS patients. Its aim is to provide information and updates on the most advanced scientific and clinical research […]

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Quality of Life is an Important Treatment Goal in Patients with MDS

In this presentation from the 2016 “European Focus on Myeloproliferative Neoplasms and Myelodysplastic Syndromes”, Dr. Fabio Efficace discusses the importance of quality of life as a treatment goal in myelodysplastic syndromes (MDS) When latest genetic analysis and therapeutic strategies are incorporated into MDS treatment the outcomes and quality of life in patients with MDS improves.Recent research trials have incorporated […]

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