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.

Top 5 Wellness Tips

Photo by Brett Jordan on Unsplash   Just a reminder from us here at MDS UK, to get in tune with a few tips to increase and maintain a balanced and healthy lifestyle. Remember to tailor solutions to your needs and seek medical advice from your CNS/GP to fit your individual requirements. 

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UK MDS Forum Education Day 2021

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? This report is written by Chris Dugmore and Claudia Richards who attended the UK MDS Forum event virtually. Having attended in person in previous years, and the event being cancelled last year, the offer of a Covid-secure attendance […]

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Repair MDS: A new approach to treat lower-risk MDS patients

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Called REPAIR-MDS (Repurposed drugs to improve haematological responses in Myelodysplastic Syndrome), the trial will test a number of treatments designed to improve the formation of healthy blood cells, reducing or reversing life-limiting deficiencies in red blood cells. The project is a national […]

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What is the latest on MDS UK funded research?

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? MDS UK has great pleasure to provide the first update on the PhD research post we started funding in January 2020. This post was made possible, thanks to legacies and donations received by our charity. This update introduces […]

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Take part in the Delphi survey: an URGENT call to patients and carers – Deadline: February 8th

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? An URGENT reminder about a slightly different type of questionnaire, run by the European big data project Harmony, which is doing research in haematological diseases, including MDS. The Harmony project WILL provide answers to complex research questions. This […]

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David P. Steensma, MD, looks for a novel therapy to treat TP53-Mutant MDS

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? TP53 gene mutations or chromosome 17 loss which results in TP53 deletion is present in up to 20% of MDS patients. Therapies for these patients have been relatively unsuccessful in delaying the progression of the disease. Emerging treatments […]

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Trial to test existing drugs against rare blood cancer

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? A new clinical trial for MDS has just been launched. Designed by clinical experts, using existing (repurposed) drugs in a new way, with wide PPI (Patient and Public Involvement) input and feedback by MDS UK advocates and patients, […]

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How have you coped over the past few months of COVID-19? Please let us know

MDS UK has teamed up with the NCRI MDS subgroup (National Cancer Research Institute), the UK MDS Forum (National MDS clinical experts group), and created a survey for MDS, CMML and AML patients and caregivers. This national survey is about your perspective and experience of the COVID-19 pandemic generally the clinical care and support you […]

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News for MDS patients from the European Registry

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? The best way to study a typical group of MDS patients is to set up a registry. A registry involves obtaining consent from patients and collect information about their MDS and the treatments they receive at their usual […]

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