Frequently Asked Questions

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Choose one device* (and one Web browser) you will use, and always use this device and browser when accessing the MPN10 site.

All of the data you enter, including your symptom scores, are stored† on the device you are using.

Do not delete your browsing data; this will delete your previous entries. This means that you should not clear your history on the browser you use; otherwise you will lose the data you have previously entered.

* Device, meaning smartphone, tablet, or computer.

† Stored, meaning you always need to use the same device and Web browser to view your previous entries.

NOTE: Your personal health information remains on your device only, unless you choose to share it with your healthcare provider.

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You may use the MPN Tracker however often is necessary to effectively track your symptoms and communicate with your healthcare provider. For example, you may prefer to score your symptoms more often if you are newly diagnosed or have recently experienced a change in treatment.

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The World Health Organization has defined MPNs as cancers since 2008. However, it is important to remember that symptoms and prognoses vary widely.

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The total symptom score is a numerical value between 0 and 100 that is calculated by adding up the individual symptom scores you entered into the MPN10 Symptom Tracker. While a higher TSS may indicate a more severe symptom burden, this number alone is not a full picture of your overall health. Speak with your healthcare provider if you have any questions or concerns about your TSS.

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When living with a chronic condition like MF or ET, it is important that you take an active role in monitoring your symptoms and discussing changes with your healthcare provider. Tell your healthcare provider if any of your symptoms become worse or more challenging for you, since this may indicate the need for alternative care management approaches.

The following questions may help you discuss your symptoms with your healthcare provider:

  • Why is it important to track or monitor my symptoms?

  • Are some symptoms more important to track closely than others?

  • How can I tell if the symptoms are due to my MPN or not?

  • What might it mean if my symptoms appear to resolve?

  • How can I better manage or track my symptoms?

  • What might worsening, or progressing, symptoms tell me about the status of my disease and my management options?

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  • How does my current disease management plan help control my symptoms?

  • What lifestyle changes can I make to help ease my MF- or ET-related symptoms?

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Novartis has sponsored the creation of this tracker to help improve disease management for patients with MF or ET. Starting with the validated MPN10 symptom assessment form, Novartis partnered with patient advocacy organisations and medical experts to ensure the additional functions in this tracker are a useful resource and help patients living with MF or ET manage their disease. Novartis does not have access to any personal or identifying information of users, nor any of the data entered into the tracker.

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You can find more information and support through MPN Voice and Blood Cancer UK, please see links below:

https://www.mpnvoice.org.uk/.

https//bloodcancer.org.uk.

These tracking tools are intended for patients with myeloproliferative neoplasms (MPNs) based in the United Kingdom. Information provided in these tools, including outputs, should not be considered an alternative to advice from a healthcare professional. Other versions of this website are not intended for UK users.

Reporting side effects: If you get side-effects with any medication you are taking, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the information leaflet that comes in the pack. You can report side effects via the Yellow Card Scheme at www.mhra.gov.uk/yellowcard (UK). By reporting side effects you can help provide more information on the safety of your medication.

 

ONC20-C108 / September 2020

This tool helps you track aspects of
your myelofibrosis (MF) or essential
thrombocythaemia (ET) so you are
prepared for discussions with your
healthcare provider and have a record
of your disease status over time.

Score your symptom severity as often
as you like.