In an article published by CURE Magazine MPN Research Foundation’s registry manager, Lindsey Whyte, sat down with Brielle Urciuoli to discuss the benefits that myMPN brings to the MPN research community.
The main objective of MPNRF’s patient registry is to expedite the development of targeted disease therapies by providing the research community with firsthand information about disease symptoms and progression. myMPN is a secure online platform where patients can complete the listed surveys, record test results, blood cell counts, medications, dosing schedules, prescription refills, etc.
“Like many rare diseases, MPNs are little understood and there is only moderate interest among pharmaceutical companies to develop drugs for ET, PV and MF,” says Lindsey Whyte. “By rallying the patient community around this tool and being able to demonstrate for the research funders and drug developers that there is critical mass and patients available for trials, we will significantly advance our cause.”
myMPN also provides a strengthening sense of togetherness within the community of MPN patients. “Their [the patient’s] isolation is compounded by the fact that this is a chronic disease, which means that very often their struggle is hidden from friends and family… We want to dispel the myth that they are alone by encouraging all with a diagnosis of an MPN to connect with others with the disease, be it through an in-person or online support group, by contributing to myMPN or just reading the comments and posts from Facebook or Twitter,” said Lindsey Whyte. “There really is strength in numbers and we don’t want patients to feel like they are facing their MPN alone.”
Click here to read the full article in CURE Magazine.