We want to hear patients views on a new study for patients with 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. 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 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.

Claire Harrison, Jean Jacques Kiladjian and the study team

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* 1. I would be interested in hearing more about a study for PV patients within the first few years of diagnosis comparing ruxolitinib (a JAK inhibitor) with either interferon or hydroxyurea

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* 2. As a patient or family member of a patient with PV I think the question of whether a JAK inhibitor should be used earlier in the disease course for PV is

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* 3. Exploring long term benefits of JAK inhibitors in preventing blood clotting or transformation to myelofibrosis in patients with PV is

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* 4. In the proposed study patients would need to have a bone marrow biopsy at the beginning of the study and after 3 years this will enable the investigators to understand more about how the different therapies work and gain information about how the bone marrow stem cells change in PV patients. Having these bone marrows at the beginning and after 3 years on study

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* 5. A further important question in this study is how symptoms affect patients quality of life, and how symptoms can change with treatments:

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* 6. New treatments are needed for patients with Myeloproliferative neoplasms like ET, PV and MF

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