Survey for the MOSAICC Study - we need your help

[Mazcd]

MOSAICC (MyelOproliferative neoplasmS: An In-depth Case-Control) Study – piecing together the causes of myeloproliferative neoplasms

A UK-wide study called the MOSAICC Study will commence in 2019 to piece together the causes of MPNs and the team running the study need your help by taking part in a survey.

Dear MPN patient,

What causes MPNs?

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 tell us by completing a short survey, click on this link to access the survey surveymonkey.co.uk/r/NYSPWXY

All information provided will be kept strictly confidential and you will not be identifiable. You can answer the questions regardless of where you live, it is not restricted to people living in the UK. Please complete by Monday 18th February 2019.

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. The MOSAICC Study Team

Make a donation or fundraise to support the MOSAICC Study

The study has so far received funding from MPN Voice to interview (by telephone questionnaire) 500 patients with MPN and 500 controls living in the UK. Leukaemia and Lymphoma NI will fund the collection of DNA and RNA for genetic analysis. Later studies will enable the team to explore how lifestyle, occupational and environmental factors may lead to the development of MPNs.

How can you help? Given that the team will be speaking to 500 patients with MPNs they would really like to make the best use of this opportunity to collect additional information and samples but don’t have the funds to do so yet, the total cost will be £62,750. This is where you could help by making a donation or organizing a fundraising event in support of the MOSAICC Study, visit our JustGiving page for more details justgiving.com/campaign/cha...

For a breakdown of the costs click here mpnvoice.org.uk/documents/M...

[Boriqua]

I am processing for therapy at the Moffitt Cancer Center at this time.

[Mazcd Partner MPNVoice in reply to Boriqua]

Hi Boriqua, sorry, I don't understand what you mean, can you explain? Thank you, Maz

[Boriqua in reply to Mazcd]

I am taking part in a clinical research study.

[Meatloaf9 in reply to Boriqua]

May I ask what you are studying?

[Boriqua in reply to Meatloaf9]

Its a study for a new medicine for people with myelofibrosis like me that are taking Jakafi, it's being offered everywhere including MPN.

[katiewalsh]

Hi Maz, I’ve just read your post on Mosaic today. Are you still interested in getting answers to what we think may cause MPNS? Katie

[Mazcd Partner MPNVoice in reply to katiewalsh]

Hi Katie, yes the survey is still open. Maz

[katiewalsh in reply to Mazcd]

Thanks.