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 firstname.lastname@example.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;