FIRST LINE PV SURVEY

[Mazcd]

We want to hear patients’ views on a new study for patients with polycythaemia vera (PV).

Researchers in the UK have teamed up with those in France to design a study for patients with PV who need a drug to lower their blood count. We propose to test Ruxolitinib (a JAK inhibitor approved in MF and patients with advanced PV) and compare it to Interferon or Hydroxyurea (Hydroxycarbamide). The study will test how good these drugs are at controlling blood counts, symptoms, side effects but importantly for the first time will test whether Ruxolitinib can reduce risk of blood clots and importantly to slow change of PV to either myelofibrosis or leukaemia.

We now want to ask patients and their families for their views of this study and how important it is for them. Patients have been involved in the study questions but now we want to ask more of you.

Thank you for taking the time to answer this short survey which will help us to design the study properly, and, as we make an application for funding will be important to gauge how much patients and their families support these plans.

The deadline for completing the survey is midnight Tuesday 20th September 2016, the survey can be completed by anyone who has PV and their family members, wherever you are located. To take the survey please click on this link:

surveymonkey.co.uk/r/BDC3PKT

With thanks.

Claire Harrison, Jean Jacques Kiladjian and the study team

[Hidden]

Hi Maz

Just a question not related to your article. I saw a analysis tool for choosing the optimal time for a stem cell/bone marrow transplant for MF a few months ago on this forum I think but can't locate it now. Any clues?

Regards

Guy

[Mazcd Partner MPNVoice in reply to Hidden]

Hi Guy, sorry, I know it's somewhere but with all the posts there are I can't remember which one I saw it on, you could do a search for it, or ask the question, I am sure whoever posted it will be able to help you. Maz

[friendofpiglet in reply to Hidden]

Could this be it?

healthunlocked.com/mpnvoice...

[Hidden in reply to friendofpiglet]

Found it! 😁 Many thanks