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 […]

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Written by Janet Hayden – Lead Myeloid Clinical Nurse Specialist – King’s College Hospital MDS specialist nurse Janet Hayden gave two talks at our recent London Patient meeting at King’s College Hospital. The first one was a report about […]

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? Written by Prof Jude Fitzgibbon, Prof Tom Vulliamy and Prof Inderjeet Dokal, Queen Mary University of London When a patient is first diagnosed with myelodysplastic syndrome (MDS), one of the most frequent questions posed is whether the disease […]

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? by Niels Jensen What is precision medicine? In precision medicine the basic idea is to develop a treatment for the specific cancer of individual patients based on a genetic understanding of their disease. Precision medicine has also been […]

Research FOR Patients -For an informed and empowered opinion- Have you made your clinical paper accessible yet? The Harmony Alliance is a first-of-its-kind partnership of over 80 private and public organisations aiming at enabling better and faster treatments for patients with blood cancers such as MDS. Patient Organisations have a very active role in Harmony, and […]