The European Hematology Association (EHA) is an annual event that welcomes hematology experts and healthcare professionals worldwide. It provides an opportunity to participate in networking opportunities, learn about the newest data from clinical and translational research, and hear updates on emerging techniques and diagnostic tools in hematology. In previous years the MPN Research Foundation has shared a poster live at the conference featuring some aspect of myMPN data (see links 2018 and 2019). However, due to COVID-19, EHA was moved to a digital platform. We presented our poster live via webinar, available to anyone in the MPN community – patient, researcher, pharmaceutical industry, and more!
This year’s poster “Characteristics and Features of Non-Caucasian Myeloproliferative Neoplasm Patients in the myMPN Registry” is a testament to the importance of patient-reported data into the MPN research community. The development of targeted disease therapies will be expedited as more firsthand information about disease symptoms and progression becomes available from patients through myMPN. As Registry Steering Committee member, Srdan Verstovsek, M.D. of MD Anderson in Houston remarked during the webinar “This is one of the first efforts to see, in a large patient registry, what is happening with minorities, and we are only at the beginning here. So it’s a very interesting effort. It gives us a lot of things to think about but, to act, as well.”
myMPN is a first-of-its-kind prospective registry that relies on recurring engagement to capture demographics, disease-related events, and symptom burden from MPN patients. Registrants access a secure online portal with a personalized dashboard that populates with surveys for completion. All patient data is protected and only shared according to individual user privacy settings.
If you haven’t joined myMPN yet, we encourage you to do so TODAY. If you’re already participating, don’t forget to periodically check-in and update your profile with your latest symptoms and any recent health events. Any questions about myMPN can be directed to Lindsey Whyte at myMPN@mpnrf.org.