The MPN Advocates Network (MPN AN) Global Survey is being conducted by the MPN AN and it is done by patients for patients. The research will be conducted to determine all unmet needs, problems, or issues that patients with MPN are facing. The goal is to provide patients and advocates the resources and knowledge to assist them at local support organisations.
The basic objective of the survey is to document and quantify the differences in the MPN patient experience around the world. The survey consists of about 50 questions covering the whole patient experience, from drug availability to financial impact and is electronically and analyzed professionally.
The eventual aim is to publish the survey’s findings in a peer-reviewed journal. It is also hoped that the resulting dataset will become a reusable resource for research and advocacy
Phase 1 was completed in 2019, providing over 1700 responses globally, 80% from the USA, UK, the Netherlands and Canada. Phase 2 is ongoing, with translations into Spanish, Hindi, Arabic, Korean and Japanese.
HOW CAN YOU HELP?
To achieve this important goal, we are kindly asking for your help. Please complete the survey yourself and share the survey link(s) to your own MPN members, through social media, email, newsletters and mailing lists. The more people we can reach, the better the data will be.
Completing the survey takes about 15 minutes and is anonymous. But once the survey is analysed the results of this data will benefit the MPN community worldwide.
At the moment we have the survey translated into 4 languages:
- English https://decoy.insider.mk/index.php/254493?lang=en
- Spanish https://decoy.insider.mk/index.php/254493?lang=es
- Arabic https://decoy.insider.mk/index.php/254493?lang=ar
- Hindi https://decoy.insider.mk/index.php/254493?lang=hi
More languages coming soon!
We thank you in advance for your collaboration.
MPN Advocates Network Team