We recently invited patients with MPNs on treatment, to complete an anonymous survey on a proposed study looking at the effect of changes in mutation levels in MPN patients on treatment.
The survey is now closed and we thank you for your participation.
Dr Jennifer O’Sullivan and Dr Alesia Khan, the study leads, have sent a message to you all:
Dear MPN Voice community,
We send our heartfelt thanks to those of you who took the time to complete our survey regarding the MPN molecular monitoring trial. We were overwhelmed with the responses, over 1,000 people completed the survey! Your responses really help us to understand how you feel about the trial and that many of you would like to take part.
Almost 80% of respondents said they would be interested to take part. Nearly 90% felt it is ‘very important’ to understand how mutation levels correlate with clinical outcomes.
In order to be able to set up the trial we need funding. We have applied for this and will keep you updated about when the trial might be able to open. The funding process takes some time so please bear with us! Your input into the process is vital, which is why we asked if people would be interested in joining a focus group. Thank you to those who expressed interest, we will be in touch very soon individually.
We cannot thank you enough and look forward to updating you again soon.
Very best wishes,
Jennifer and Alesia
