The MPN Research Foundation (MPNRF) is proud to announce that early data from the recently launched myMPN, a registry for patients with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis, was used in the presentation of a poster at the 23rd Annual Congress of European Hematology Association (EHA) in Stockholm, Sweden. The poster, titled “The “myMPN” Patient Registry: Validation of a Prospective Myeloproliferative Neoplasm Patient Registry”, compares symptom burden data entered directly by patients in myMPN since its launch to similar data gathered via surveys taken in clinics in 2011. The poster concludes that myMPN is a valid tool to address key critical questions regarding MPN patient symptom and treatment needs.
Dr. Robyn Scherber (pictured) of the Mays Cancer Center at UT Health San Antonio MD Anderson presented the poster which she co-authored with Dr. Ruben Mesa (Director, Mays Cancer Center at UT Health San Antonio MD Anderson) Amylou Dueck, Ph.D. (Mayo Clinic, Scottsdale), Dr. Srdan Verstovsek (MD Anderson Cancer Center, Houston), Dr. Claire Harrison (Guy’s and St. Thomas’ Hospital, London), and MPNRF’s Lindsey Whyte and Michelle Woehrle. MPN Research Foundation thanks the sponsors of myMPN and emphasizes that, without the active engagement of myMPN participants, this publication would not have been possible.
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 over time. 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. The development of targeted disease therapies will be expedited when firsthand information about disease symptoms and progression are available from patients through myMPN. Any questions about myMPN can be directed to Michelle Woehrle, Executive Director, MPN Research Foundation or to myMPN@mpnrf.org.
EHA is an annual event that welcomes hematology experts and healthcare professionals from all over the globe 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. To view the webcast sessions, abstracts and other materials from the conference visit the EHA Learning Center by clicking here.