Chicago, IL (PRWEB) September 18, 2017
Individuals living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis are now invited to participate in the first ever patient advocacy driven registry for people with an MPN (myeloproliferative neoplasm). This new initiative is called myMPN and was launched in September at the beginning of Blood Cancer Awareness Month. Information about this project and the link to enroll can be found at http://www.mpnresearchfoundation.org/myMPN.
Through myMPN the MPN Research Foundation provides patients with an opportunity to share information about their experience with MPN with researchers. The “How do you feel today” survey records symptom data in real time. There is a "Health Event" survey for people who have had a change in diagnosis, medication change, hospitalization or other medical event they'd like to include in myMPN. Participants will be able to see how they compare to others in myMPN. Almost 100 people are already participating on a regular basis.
Dr. Ruben Mesa is the chair of myMPN's steering committee which also includes representatives from Mayo Clinic, Guys and St. Thomas’ Hospital in London, Mt. Sinai School of Medicine, Oregon Health Sciences University, MD Anderson and Johns Hopkins University. The Steering Committee provided feedback and oversight for the protocol and surveys that are included in myMPN and will help set data access guidelines and lead the evolution of the surveys over time.
"The goal is to collect data that can be used help patients." says myMPN Project Manager Lindsey Whyte. "Up until now we only had anecdotes about what people with PV, ET and MF were going through. myMPN provides a safe, reliable, accessible means by which patients can record and share their data with a wider research community."
myMPN is launching with patient reported data, but the Foundation is looking to add a feature for patients to share their electronic health records from their healthcare provider if they want to. This will strengthen the quality of the data and improve what researchers have to work with. Aggregated together with data from other patients, a participant's experience shared in myMPN will help guide research, identify unmet needs of patients and direct patients to clinical trials they may qualify for. myMPN is currently approved for U.S. based patients, but expansion to other countries is being explored, as is translation beyond English and mobile-responsiveness.
About The Myeloproliferative Research Foundation
The MPN Research Foundation is the only organization fully dedicated to funding research into the myeloproliferative neoplasms, a rare group of blood cancers which include polycythemia vera, essential thrombocythemia and myelofibrosis. Founded in 2000 by a group of patients, the focus is to fund high innovation research that can expand our understanding of the MPNs and get us closer to a cure.
The Foundation’s Scientific Advisory Board works with the patient-led board of directors to utilize a rigorous selection process to ensure donations are allocated to the most innovative research projects. To date, the Foundation has awarded twelve million dollars for MPN research. More information may be obtained at http://www.mpnresearchfoundation.org/myMPN or by contacting us at mwoehrle(at)mpnrf.org or 312-683-7243.
MPN Research Foundation remains committed to a portfolio of research funding that includes an annual Request for Proposals for new scientific ideas of how to help patients with PV, ET and MF, as well as strategic research initiatives focused on areas of unmet need that could prove fruitful for improving the quality and/or length of life for MPN patients. You are invited to learn more at http://www.mpnresearchfoundation.org