MPN PROGRESSion Registry A Long-Term Observational Study Tracking Symptoms, Treatments, and Disease Progress in Adults With Myeloproliferative Neoplasms

What this Trial Is About

Researchers are conducting the MPN PROGRESSion Registry, a long-term observational study to better understand myeloproliferative neoplasms MPNs, a group of rare, chronic blood cancers including polycythemia vera, essential thrombocythemia, myelofibrosis, and related subtypes. The study aims to collect real-world data on disease progression, treatments, symptoms, and quality of life from a diverse population to identify factors influencing outcomes and improve future care and research. This registry is non-interventional, with patients continuing their usual medical care. Participants will share health information including electronic health records, laboratory results, insurance claims, and patient-reported outcomes such as symptom surveys. These surveys include assessments of fatigue, mental health, and quality of life, collected every three to six months. The study plans to enroll about 1,500 adults diagnosed with various MPN subtypes, some having had stem cell or bone marrow transplants. Data will be gathered and analyzed for at least five years, with many participants followed for ten years or more, to track disease changes and patient experiences over time. During the study, participants will complete regular surveys and symptom tracking tools, while researchers review medical records and claims data to monitor clinical status and treatments. The main outcome measured is time to disease progression, with secondary measures including survival, symptom scores, and quality of life assessments. Privacy and data security are priorities, and participants can withdraw at any time without impacting their care. Results will help guide future research, clinical guidelines, and support patient-centered care in MPNs.

MPN PROGRESSion Registry: Observational Study Tracking Symptoms, Treatments, and Disease Progression in People With Myeloproliferative Neoplasms (MPNs)