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…