Nutrient Study Trial in US

Hey all my MPN friends...

A group of MPN people in Australia recently emailed me the following information in relation to a study that aims to control MPNs through food and diet... (please see the information below)

...the Mayo Clinic's new NUTRIENT Trial, which is a survey to investigate the impact of nutrition on MPN Symptoms. Please follow the link below to take part in this exciting new study...

'Greetings to our myeloproliferative neoplasm (MPN) patients and dear friends! We would like to tell you a little about one of our new research projects and invite you to participate. Patients with types of MPNs including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) such as you often experience severe symptom burden including fatigue, abdominal complaints, nausea, weight loss, and constipation. Growing evidence indicates that there are alternatives to traditional pharmacologic therapy that may help to improve these symptoms. To date no research endeavors have investigated the impact that different foods may have in MPN patients.

This research project, entitled the NUTRIENT Trial (NUTRitional Intervention among myEloproliferative Neoplasms Trial), is designed to evaluate how changes in nutrition can help control MPN disease-related symptom burden. In this first part of our study, we have created a survey to help us understand the dietary needs, habits, and preferences of individuals with MPNs. The link to the survey can be found at:

src.co1.qualtrics.com/SE/?S...

We ask that you consider partnering with us to improve our understanding of nutrition in individuals with MPNs by completing this survey. We ultimately plan to use this information to develop a nutritional intervention to see if we can change how you feel.

This survey will take an average of 10-15 minutes to complete, although some people make take longer. We do not ask for any sensitive or personal information in this survey, but we do ask about features associated with your MPN disease, what symptoms you are experiencing, your dietary habits and preferences, what supplements you may use, and what dietary needs may not be met (such as weight loss).

We thank you for your time and commitment to improving the lives of MPN patients around the world.

Robyn Scherber MD, Angela Fleischman, MD,PhD & Ruben Mesa, MD'

Best wishes to all...

Steve

(Sydney)

7 Replies

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  • Hi everyone, I am going to send out the details of this survey today, I was unfortunately given the wrong link to the survey and have only just received the correct one this morning. Maz

  • hi maz

    i am a seventy five year old female diagnosed with e.t. nearly two years ago.

    i am disappointed to learn that i am too late for the nutrition survey done by australians. as a dedicated vegetarian and moderately healthy for my conditon i would like to contact them or find out the results of the survey. any info you can give me would be greatly appreciated. thanks glenda

  • Hey pvnow3... :)

    You could try to contact the Mayo Clinic by phone of via their website to ask more questions about that past survey... just a thought...

    Steve

    (Sydney)

  • Hi Glenda, sorry that you missed the study, you can contact the team for more information on the study here.. wearempn.org/contact/

    they may still be able to let you take part. Best wishes, Maz

  • Glad I could help Maz... :)

  • You are a star, and thank you. XXXX

  • And you are aMAZing... :)

    Thank you for all your tireless work Maz...

    Steve

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