myMPN uses patient data to influence research + treatment — and ultimately, find a cure for MPNs.
About myMPN Patient Registry
myMPN empowers you to change your prognosis by sharing your 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 like you.
What is myMPN?
- It’s a digital hub for patients to record and anonymously share their unique MPN journey with the research community
- Registrants 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
- It’s a place for eligible patients to connect with upcoming drug trials and research that will help increase our knowledge about PV, ET and MF
What are the benefits of joining myMPN?
- You will contribute to the first-ever repository of natural history data for MPNs in the US.
- The ultimate benefit is to equip the research and drug development community with the data they need to move better MPN treatments (and, potentially, cures) through the discovery pipeline more quickly.
- You will learn about clinical trials that may be of interest to you.
Will I be able to see what drug trials are available for me?
If you opt to receive information, you’ll be alerted when pertinent clinical trials are recruiting.
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. You will also receive emails informing you 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.