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 study investigating how effective this therapy was for MPNs, the MOSAICC study and are currently contributing to the funding the MEASURES study.
Symptoms can be a big issue with patients who have MPNs, and perhaps worst in patients with myelofibrosis (MF), but it is also present in the majority of people with essential thrombocythaemia (ET) and polycythaemia vera (PV). Many things can contribute to this, including the disease, medications that an individual is prescribed or sometimes a change in blood counts. Fatigue is one of the commonest symptoms which can have a major impact on the daily lives of MPN patients, reducing some people to having to stay in bed for days on end.
Measures is a study where both you and your doctor fill in a questionnaire about your symptoms and quality of life before and after a change in therapy for your MPN.
It is a study run by the MPN Quality of Life Foundation headed by Dr Mesa and several others including Professor Harrison.
MPN voice is supporting the inclusion of this study on a national trial programme so that it can be run in as many hospitals as possible it is currently open in over 20 centres in the UK
For more information click here…