Help us to develop a questionnaire for the MOSAICC study

Dear MPN Patient

Help us with developing a questionnaire for the MOSAICC study which will be the world’s largest study to try to identify the cause(s) of Myeloproliferative neoplasms (MPNs) including polycythaemia vera, essential thrombocythaemia and primary myelofibrosis.

As we continue to facilitate research into new treatments for the various forms of MPN we appreciate all of those who support our work through fundraising and participation in research.

Identifying the triggers and possible causes of MPNs will enable us to focus our research to identify how to prevent people getting MPNs and to develop better medications and treatments and improve quality of life of patients living with these conditions.

This will not be easy, as it will require us to recruit volunteers to complete very detailed questionnaires about their occupations, leisure and sports activities, and general lifestyle. This data can then be analyzed along with genetic information obtained from blood and/or saliva by the MOSAICC study team to look for causes of MPNs.

We are currently identifying questions, which would be useful to include in the MOSAICC research study. We believe the answers to what causes MPNs are out there we just haven’t asked the right questions yet. If you or members of your family or support network have any questions which you believe would assist us in our research (what do you think might cause MPNs?) please answer the questions below.

All information provided will be kept strictly confidential and you will not be identifiable. As not all MPN patients will be eligible to take part in the new MOSAICC study, contributing to this initiative to refine the key research questions to be asked means everyone can help with this important study.

Thank you for your support.
MPN Voice and the MOSAICC Study Team

Question Title

* 1. Why do you think you got your MPN?
(Please do not provide any information that may identify you or others in your comment e.g. name, date of birth, residence) Please be brief.

Question Title

* 2. What should we ask patients with MPN in the MOSAICC Study?