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.

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 […]

Read full story

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 […]

Read full story

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 […]

Read full story

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 […]

Read full story

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 […]

Read full story

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, […]

Read full story

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 […]

Read full story

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 […]

Read full story

What is CMML? Latest Research on a Unique Syndrome

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? A recent article in the American Society of Hematology (ASH) Clinical News has identified how, for too many years and despite its unique clinical and biological characteristics, CMML (Chronic Myelomonocytic Leukaemia) has been treated as a form of […]

Read full story
Free donations by shopping

Sign-up to Download our Free Patient Handbook!

You have successfully subscribed to the newsletter

There was an error while trying to send your request. Please try again.

MDS UK Patient Support Group will use the information you provide on this form to be in touch with you and to provide updates.