myMPN: a tool for people with PV, ET and MF
myMPN History and Governance
In 2015 the MPN Research Foundation decided to create a registry for people with PV, ET, and MF. This registry - myMPN - is a tool in which patients can raise their hands and be counted. Currently, MPN patients aged 18 or over can enter their demographic information and disease history, record their symptoms, experience with different therapies and log information about health events such as blood draws, transfusions, hospital stays, pregnancies, thrombotic events and more. Patients can also learn about clinical trials and, if interested, share their data with researchers interested in finding better therapies to treat MPNs and the specific symptoms associated with them.
We are working with Genetic Alliance's PEER platform, which allows patients to control with precision who can access their data. Patient privacy is top of mind and this was a key factor in our decision making. We also appreciate that they are a non-profit group also focused on further research for people living with disease.
We have built this project based on input from patients and MPN researchers around the world, and we are thrilled to have some on our Registry Steering Committee;
- Ruben Mesa, Mays Cancer Center at UT Health San Antonio MD Anderson (Chair)
- Amy Lou Dueck, Mayo Clinic
- Holly Geyer, Mayo Clinic
- Claire Harrison, Guys and St. Thomas’ Hospital, London
- Camelia Iancu-Rubin, Mt. Sinai School of Medicine
- Alison Moliterno, Johns Hopkins University
- Robyn Scherber, Mays Cancer Center at UT Health San Antonio MD Anderson
- Srdan Verstovsek, MD Anderson
The Steering Committee has final oversight over the composition of the surveys that will be used in myMPN, and they will help us define optimal privacy settings, how data will be shared, future surveys to add, and let us know whether features of the registry (such as what kinds of data will be useful) can be used for research or not.
The goal of myMPN, as with all our projects, is to help the people living with an MPN change their prognosis. This is a research tool that we hope will lead the way towards new therapies for people with MPN, or understanding of what therapies work best with which population (and at which time). It is important - especially for rare diseases like polycythemia vera, essential thrombocythemia and myelofibrosis - to participate in research in as many ways as possible & myMPN offers a new way for patients to make their needs known to the world.
myMPN is now open for enrollment! Click here to start.
MPNRF's Executive Director Michelle Woehrle discusses research plan, their take on ASH16 and the launch of myMPN - the patient registry the Foundation is kicking off for people with PV, ET and MF. To learn more about the registry or to be part of the beta test, reach out to firstname.lastname@example.org
Thank you to our sponsors for their support: Incyte Corporation and Promedior, Inc.
Stay informed about myMPN – the MPN Research Foundation patient registry.
We will provide updates on the project