Fireside Chat
LeadersLink Kapila Viges
- The MPN Research Foundation anticipates eventual cures for myeloproliferative neoplasms, targeting a U.S. patient population estimated at approximately 300,000 individuals.
- A large-scale data collection initiative is planned to establish a real-world evidence registry, utilizing a new peer network and collecting electronic medical records with patient consent.
- The project will leverage partnerships with experienced experts, including IQVIA, to develop a roadmap spanning the next several years for launching the registry.
- Research goals include identifying biomarkers and clinical signals to predict disease progression, distinguishing between patients with stable chronic management versus those at risk of worsening conditions.
- The foundation intends to generate clinical evidence to define new trial endpoints, such as progression-free survival, which currently lack established definitions in MPN research.
- Registry design will integrate perspectives from patient voices, physician scientists, and industry leaders to ensure comprehensive planning.
- The program strategy involves breaking the initiative into phased milestones to set accessible short-term outcomes that allow financial investment flexibility while iterating toward long-term objectives.
- Key challenges identified include the financial feasibility and sustainability of executing a large-scale data collection effort.