myM yMPN PN: : Ch Chan angi ging ng Th The Pr Prog ogno - PowerPoint PPT Presentation

myM yMPN PN: : Ch Chan angi ging ng Th The Pr Prog ogno nosi sis

MPN Patient Registry The registry is a powerful Establish a tool for patients, community researchers, clinicians and industry Learn about Recruit disease patients for prevalence trials and progression myMPN Study best Drive practices in research care or goals treatment

Registry Development • Internal dialogue at MPNRF about registry began in ~2010 • Steering Committee formed Robyn Scherber, M.D., M.P.H., OHSU Brady Stein, M.D., MHS, Northwestern University Amy Lou Dueck, PhD, Biostatistician, Mayo Clinic Srdan Verstovsek, M.D., PhD, MD Anderson Houston Ruben Mesa, M.D., Mayo Clinic, Scottsdale Holly Geyer, M.D., Mayo Clinic Claire Harrison, M.D. Guy’s and St. Thomas’ Hospital London John Mascarenas, M.D., Mt. Sinai • Reached out to peers who have registry – best practices, pitfalls and successes • Comparison of features and benefits of various registry platforms (NORD, Genetic Alliance, Patient Crossroads)

myMPN in process Platform selected was PEER from Genetic Alliance - fully customizable privacy controls - GA mission consistent with MPNRF

myMPN Goals 2016-2019 Target patient profiles • 2017 2018 2019 150-300 300-1,500 1,500-6,000 • 2016 – Q4 beta testing, survey upload, data review, develop policies for • data access with steering committee, IRB approval 2017 - focus on increasing participation through outreach to peer groups, • centers of excellence, industry meetings, demonstrating value through periodic data summaries, launch mobile access to the registry 2018/2019 - Rollout of new features possibly including EMR upload, • additional languages, exploration of tissue banking, etc

Thank you!