MPN Voice
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Share Your Thoughts on Clinical Trials- Take Our Survey

Patient Power’s Andrew Schorr will be speaking again before another major audience – this time in Boston on July 21st to heads of research at pharmaceutical companies and government officials. They know clinical trial participation is very low and they want to hear from patients on how they can help turn this around. According to the National Cancer Institute, clinical trials are "research studies that involve people to find new ways to improve treatments, prevent cancer, manager cancer symptoms and side effects and the quality of life for cancer patients". Andrew needs your perspective on clinical trials. So please take a few minutes to share your view. Your personal information is always kept strictly confidential. Thanks! surveygizmo.com/s3/2897038/...

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Hi tclementi... :)

Thanks for your post, I have replied and I hope it helps. It seems to me that there is very little being done in the arena of MPNs simply because the disorder is so rare, and therefore there is very little in the way of funding research into MPNs in comparison to solid cancers. In Australia, there are an estimated 650 new cases of MPNs per year. I have the results of a study completed by the Leukaemia Foundation in Australia, if you are interested, just let me know? Happy to send you a .PDF

Steve

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Thanks so much Steve! Please feel free to pass along to any other patients who might know as we'd love to have more MPN voices. I am interested in seeing those results. Can you private message me them on here? -Theresa

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Happy to send the report but I am uncertain as to how to send to a private message as you have suggested, can you walk me through it? :)

Steve

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No problem! But if it's easier, you can just email it me at theresa@patientpower.info Thanks :)

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No problem... on its way Theresa... :)

Steve

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I would be interested in reading that study. sklines3@gmail.com

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Hey Sklines...

I will email you the report shortly sorry about my delay.

Steve (Sydney)

ET/MF?

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Undefined. Jak2 positive but bloodwork normal. Originally tested due to high platlets (500). Platlets returned to high end of normal. Not on any medications. Will turn 69 in August. Been stable for about 4 years.

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Iv been on a trial with ruxulitnib for 3 years ,,been well most of that time !i answered the questinaire and submitted it ,,really hope it helps ,,,twinkly x

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Thank you so much Twinkly! Glad to here you're doing well!

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