In an article published by CURE Magazine, Robyn M. Scherber, M.D., M.P.H, assistant professor of medicine in the Department of Hematology and Oncology at UT Health San Antonio MD Anderson Cancer Center, and co-author Michelle Woehrle, the executive director of the MPN Research Foundation sat down to discuss the newest findings from MPNRF’s patient registry, myMPN.
myMPN is an online portal where empowered patients can help change their prognosis by sharing their experience of living with an MPN. The development of targeted disease therapies will be expedited when firsthand information about disease symptoms and progression are available from patients.
The article stated, “Since the study began a year ago, 2,100 disease-related events were reported to the registry, including 825 blood draws, 144 bone marrow biopsies and 77 transfusions. Ten patients reported that their disease has transformed from one type into another. To provide data on their symptoms, 400 patients completed 675 symptom assessments – many patients completing two or more.”
Scherber, who is also on the myMPN steering committee said, “This data is valuable to researchers for many reasons. We have been able to see changes in symptom burden over time as well as with various therapies. We have also been able to track many disease-related events that will allow us to understand some of the risk factors and outcomes in patients with these events.” Scherber also added, “We have recently discovered an exciting association between symptom burden and disease driver mutations by evaluating this registry data. We have also noted that symptoms vary highly by therapy, which we are investigating further.”