Looking back and moving forward: A year of progress for MPN PROGRESSion Registry®

September 26th marked an important milestone: the first anniversary of the MPN PROGRESSion Registry® launch. The Registry is a collaborative, patient-focused research initiative working to collect comprehensive myeloproliferative neoplasm (MPN) patient health data and self-reported surveys over a 5-10 year period. The goals of the study are to help scientists and clinicians better understand the causes of MPN disease progression, identify new treatments, assess efficacy of care strategies, and support the development of globally recognized endpoints.

Year one yielded many successes: over 725 MPN patients registered for the study, dozens of clinicians began sharing Registry information with patients, and three rounds of technical improvements were made to the Registry portal system based on participant feedback. Early data analyses were performed to confirm future viability. Efforts to provide participants with valuable information and create a meaningful Registry community were also launched: quarterly Read Up newsletters, and triannual online Meet Ups, where enrolled patients can choose to interact with other study participants in small online breakout rooms.

Work remains to ensure MPN PROGRESSion Registry success. To effectively support future MPN research, the Registry enrollment target is at least 5000 patients, with high overall participation rates of those providing connections to their EMR (electronic medical record) data and submitting quarterly PRO (patient-reported outcome) surveys. Major outreach and enrollment efforts will continue and expand in support of these goals. Starting in 2027, early data from the Registry will be available to approved academic investigators and biopharmaceutical partners.