MPN QoL Study Group MPN & COVID-19 Survey STILL OPEN

[Mazcd]

During the last few months we have been asking you to complete a number of surveys regarding COVID-19 and its impact on MPN patients, your response, as always, has been amazing and we thank all of you who have taken the time to complete them and we apologize, once again, if we have given you ‘survey fatigue’.

The most recent survey we advertised was the MPN QoL Study – MPN and COVID-19 Survey, which is being conducted by the Mayo Clinic and the MPN QoL Study Group mpnqol.com/ to investigate the experiences of MPN patients during the COVID-19 pandemic. The survey asks about how the COVID-19 outbreak has impacted your MPN care, both in bad and good ways, as well as your everyday life. The team hopes to use data from the survey to improve care of MPN patients during and after the COVID-19 pandemic.

The team have so far had over 1,000 MPN patient respondents, 375 of these were from the UK, and are very grateful for all who have completed it.

If you have not had a chance, especially if you have, or had, COVID-19 and recovered, please consider completing the survey, your participation in this research survey is highly valuable to the MPN community.

This is an international survey and is open to all MPN patients regardless of where you live.

To be directed to the survey, click on the link below.

redcap2.mayo.edu/redcap/sur...

Thank you for your support.

[trotty100]

I think I have taken part, I would be interested in the mosaic study mentioned on the webinar, I was diagnosed 2 years ago ,on the borderline of the criteria but being83 and living in Lincolnshire this may also rule me out. I would be interested if I may be of any use.

Margaret

[Mazcd Partner MPNVoice in reply to trotty100]

Hello Margaret, you will need to discuss this with your haematologist so they can advise you if your hospital is one of the participating hospital, and whether or not you meet the criteria. I have this information from Prof McMullin who gave the presentation:

The MOSAICC study is opening across 18 sites in the United Kingdom in 2020/2021. Sites in the Republic of Ireland are planned when funding is secured. The study is investigating the causes of myeloproliferative neoplasms and will involve completing paper questionnaires, participating in a telephone interview and providing blood, saliva and toenail clipping samples. Only patients who have been diagnosed in the last 24 months will be eligible to participate. If you meet the eligibility criteria and your hospital is participating in the study your consultant/research nurse will ask you about participating in the study during a routine appointment. It is really important that we hear from as many eligible patients as possible so if you are invited to participate we would encourage you to do so.

kind regards, Maz

[trotty100 in reply to Mazcd]

Thanks Maz for this information

Regards

Margaret

[Fizzydog]

I’ve just completed the survey

[denmanjemima]

Is CLL chronic leucocytic leukemia an MPN?

[Mazcd Partner MPNVoice in reply to denmanjemima]

no