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 […]

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 […]

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 […]

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 […]

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, […]

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 […]

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 […]

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 […]