myMPN: a tool for people with PV, ET and MF
On December 31, 2020, the myMPN Patient Registry will be taking a 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 uses patient data to influence research + treatment — and ultimately, find a cure for MPNs.
About myMPN Patient Registry
myMPN empowers patients to change their prognosis by sharing their experience of living with an MPN. The development of targeted disease therapies will be expedited when firsthand information about disease symptoms and progression are available from patients.
What is myMPN?
- It’s a digital hub for patients to record and anonymously share their unique MPN journey with the research community
- Participants can access a secure online portal with a personalized dashboard. As they complete surveys listed on the dashboard, the registry will provide insights into how the user's MPN experience compares to other registry users
- All patient data is protected and only shared according to individual user privacy settings
- myMPN is a place for eligible patients to connect with upcoming drug trials and research that will help increase our knowledge about PV, ET, and MF
Participation in the registry is currently limited to those inside the U.S. and over the age of 18 but further expansion is on the horizon. myMPN is not yet mobile-friendly so please use a laptop or desktop to access your myMPN account.
Watch the webinar below to learn more about how patients can contribute to the cancer community and scientific research by sharing their voice.
What are the benefits of joining myMPN?
- myMPN functions as a repository for each participant's experience with an MPN. Each completed survey is accessible by the user going forward. Participants can download their symptom, event and other data to share with their doctor or for other purposes.
- The registry provides participants with the opportunity to inform the research and drug development community with data they need to move better MPN treatments (and, potentially, cures) through the discovery pipeline more quickly.
- The platform offers the research community the ability to follow-up on specific topics of interest. For example, a researcher may request additional info on the experience of a group of patients who have used a certain therapy. A targeted survey can be pushed to those users for research purposes.
- Participants will learn about clinical trials that may be of interest to them.
Will I be able to see what drug trials are available for me?
If a user opts to receive information, he/she may be alerted when clinical trials are recruiting that may be suitable.
How many emails will I receive?
Because the data collection is meant to be ongoing, we will send emails periodically to encourage continued engagement with the registry. Users will also receive emails informing them of special surveys, trials, etc.
Will the information I share be kept private?
Data is stored by PEER (Patients Engaging Everyone Responsibly) on a secure server. You decide how your data is used.