Saturday 28 November 2020 online from Ireland This MPN Voice patient support event will focus on managing the emotional and wellbeing aspects for people with MPNs during the COVID-19 pandemic, keeping safe and living well during the uncertainty. Feeling concerned or overwhelmed by the news of Coronavirus is understandable, whether you are thinking about your…
MONOCLE Trial for patients with CMML (Chronic Myelomonocytic Leukaemia) The aim of this study is to assess the effectiveness and safety of a new drug, called Tefinostat, for patients with CMML (Chronic Myelomonocytic Leukaemia). Tefinostat is an oral agent that belongs to a family of drugs called ‘histone deacetylase inhibitors’. Tefinostat only gets converted to its active…
A phase II study of Vorinostat (MK-0683) in patients with polycythaemia vera and essential thrombocythaemia Results of the research This study, known as the ‘Vorinostat’ trial, was carried out in the UK and Denmark with support from MPN Voice. This support was crucial in getting the trial open and running in the UK. The trial…
We are very keen to support research and trials that ultimately will help MPN specialists understand the complexities and causes of these rare blood cancers so that patients and their families will benefit from better care and more treatment options. Since the formation of MPN Voice we have funded several important studies including the vorinostat…
Recruiting MPN Trials and MPN Trials in ‘Set-up’ Phase The Haematology Research Team at Guy’s Hospital, London, are currently recruiting patients for a number of trials which are now open. There are also a number of trials which are currently in the ‘set-up’ phase. For details of the trials currently recruiting and in the ‘set-up’…
Essential thrombocythaemia (ET) and polycythaemia vera (PV) TAMARIN Effects of TAMoxifen on the Mutant Allele Burden and Disease Course in Patients with Myeloproliferative Neoplasms – ET/PV and MF The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre phase…
Ruxolitinib Managed Access Program (MAP) for Patients Diagnosed With Severe/Very Severe COVID-19 Illness The purpose of this Cohort Treatment Plan is to allow access to ruxolitinib for eligible patients diagnosed with severe/very severe COVID-19 illness. The patient’s Treating Physician should follow the suggested treatment guidelines and comply with all local health authority regulations. Condition or…
It can be confusing hearing lots of new and unfamiliar medical terms. Use our glossary for help in understanding more about MPNs. Acute myeloid leukemia (AML) Also known as acute myelogenous leukaemia or acute non- lymphocytic leukemia. A quickly progressive malignant disease in which there are too many immature blood forming cells in the blood…
What is polycythaemia vera (PV)? People with polycythaemia vera (PV) produce more red blood cells than normal. PV may also affect the production of your other blood cells, for example your body may also produce too many platelets and white blood cells. Recent research shows that nearly 97% of people with PV have a mutation…
In this video, Albert talks about how he was diagnosed with myelofibrosis and how it’s affected his life. Albert took a new drug which at the time of filming was under trial to treat myelofibrosis. This drug is a JAK2 inhibitor called Ruxolitinib. Albert was very pleased with how he responded on the new medication.…