myMPN Patient Registry

http://www.mpnresearchfoundation.org/myMPN

A research project developed to act as a resource for mpn investigation as described below:

“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 ClinicHolly Geyer, Mayo ClinicClaire Harrison, Guys and St. Thomas’ Hospital, LondonCamelia Iancu-Rubin, Mt. Sinai School of MedicineRobin Scherber, Oregon Health Sciences UniversityBrady Stein, Northwestern UniversitySrdan 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.”

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Comment from the MPN Education Foundation: “Those who participate may wish to take the opportunity to change the default privacy settings so that they are notified when the MPN Research Foundation uses their survey data, and when researchers do so. Participants may then expect to be contacted, or can specify no contact. Note also: donation is not required to participate, and many researchers are likely to have independent funding.”