myMPN Data Privacy and Sharing

myMPN lets you - the patient - control who, if anyone, sees your information. There are customizable privacy settings that you can adjust at any time. Note that if you restrict access, your data won't be reviewed by MPNRF or our Steering Committee researchers. That is fine if you want to use myMPN as a means to record your symptom and medicine changes for your and your doctor's benefit, but be aware that it won't be counted when we use data from myMPN for research purposes.

All data in myMPN is de-identified.  This means that responses to survey questions are coded with an identifier which is separately linked to patient identity (only if the participant allows that through the aforementioned privacy settings) elsewhere in the system.  Aside from basic demographic information such as age and geographic location, identity information is seldom needed in registry data analysis.  Agreeing to allow access to identity information is unnecessary but helpful in ensuring that follow-up can occur if there are clinical trial opportunities or a need to verify information, for example.   

Terms of Use for myMPN are found on every page of the registry at the bottom of the page.  You will also find links to the End User License Agreement with Private Access (the company that developed the registry system with Genetic Alliance) and the Privacy Policy for PEER (Platform for Engaging Everyone Responsibly), the registry platform, itself, at the bottom of each page. After viewing the video above, if you have additional questions, you can review the document below titled "Explanation of Privacy Settings."

Separately, the MPN Research Foundation also has documents governing the registry and the use of data which can be found below.

If there are any questions, we welcome you to contact us at myMPN@mpnrf.org.

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. 

Explanation of Privacy Settings

The following documents relate to requests for myMPN data for research purposes:

myMPN Data Use Policy

myMPN Data Request Form

MPN Research Foundation Registry Data Use Agreement

 

x

NEVER MISS AN UPDATE

Get free, timely information on living with an MPN.

Subscribe