myMPN Governance and Oversight
myMPN launched in 2017 as a vehicle for patients to self-report their experience with PV, ET and MF into a safe, secure registry, and ultimately share their data with the research community. MPN Research Foundation spearheaded 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 Clinic
Holly Geyer, Mayo Clinic
Claire Harrison, Guys and St. Thomas’ Hospital, London
Camelia Iancu-Rubin, Mt. Sinai School of Medicine
Alison Moliterno, Johns Hopkins Hospital
Robin Scherber, Oregon Health Sciences University
Srdan 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 financing for year one of myMPN came from the Foundation's funds, raised from the patient community. We are pleased to have accepted donations from several industry partners for this endeavor. All decisions about the registry are held to the values set forth by MPN Research Foundation's Statement of Independence as well as run through the myMPN Steering Committee, based on their commitment first and foremost to the needs of the patient community.