myMPN History and Governance

MYMPN: A TOOL FOR PEOPLE WITH PV, ET AND MF

The myMPN Patient Registry is currently on pause from collecting patient-reported data to reflect on our progress and evaluate how to grow the program further. We appreciate your understanding, and we look forward to seeing you back soon! Please direct any questions, comments, or concerns to mympn@mpnrf.org.

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 the 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, M.D., Mays Cancer Center at UT Health San Antonio MD Anderson (Chair)
  • Amy Lou Dueck, Ph.D., Mayo Clinic
  • Claire Harrison, M.D., Guys and St. Thomas’ Hospital, London
  • Camelia Iancu-Rubin, M.D., Ph.D., Mt. Sinai Medical Center
  • Alison Moliterno, M.D., Johns Hopkins Hospital
  • John Mascarenhas, M.D., Mt. Sinai Medical Center
  • Robyn Scherber, M.D., Mays Cancer Center at UT Health San Antonio MD Anderson
  • Srdan Verstovsek, M.D., 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. 

Take the steps you need to help change your prognosis.