myMPN: a tool for people with PV, ET and MF
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, record their symptoms, demographic information and experience with different therapies, learn about clinical trials and, if interested, share their data with researchers interested in helping 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, Mayo Clinic (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
- Robin Scherber, Oregon Health Sciences University
- Brady Stein, Northwestern University
- 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 and myMPN offers a new way for patients to make their needs known to the world.
Beta testing is now underway, and we hope to enroll patients beginning in quarter 2 of 2017. To be kept up to date about the registry and to find out when enrollment begins send an email to firstname.lastname@example.org
Thank you to our sponsors for their support: Incyte Corporation and Promedior, Inc.
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 email@example.com
Stay informed about myMPN – the MPN Research Foundation patient registry.
We will provide updates on the project as well as let you know when patients can enroll