MPN Voice URGENTLY needs your help and feedback to support an application to NICE (National Institute for Health and Care Excellence) for the prescribing of Momelotinib to Myelofibrosis (MF) patients living in England & Wales.
But we want to hear from you if you have MF regardless of where you live or whether you have had Momelotinib. This decision will initially only affect patients in England & Wales but it’s important for patients who live elsewhere in the UK and around the world.
Momelotinib is being appraised as a treatment for MF patients who suffer from disease-related splenomegaly (enlargement of the spleen) and/or other symptoms caused by MF. Momelotinib is not currently available to MF patients except via a clinical trial.
MPN Voice, with the help of Prof Claire Harrison and other MPN specialists, is co-ordinating a submission on behalf of MF patients to NICE for the prescribing of Momelotinib to patients living in England & Wales. This medication may also be of benefit to patients outside of England & Wales so we are asking ALL MF patients, regardless of whether or not they have received Momelotinib or whether or not they live in England & Wales, to complete a short survey about symptoms etc, which will provide information for the submission. Please do not complete the survey if you have ET or PV.
There is also a survey for family members and carers to complete, as we would like to know their views as well. More than one person in your family can complete the survey, but only if you have MF, they cannot complete it if you have ET or PV.
You do not have to live in the UK to complete the surveys. All replies are anonymous and the survey should take no more than about 10-15 minutes to complete.
The deadline for completing the survey is: Friday 4th August 2023.
Please click on the links below to access the surveys:
Patient Survey
Family & Carers Survey
Many thanks in advance for your help and support in providing this important feedback to support our application to NICE.
