National Research Platform Studying Treatment, Quality of Life, and Outcomes in Adults with Primary and Secondary Myelofibrosis and Anemia Including Those New to or Experienced with JAK Inhibitor Therapy

What this Trial Is About

Researchers are conducting a national, prospective, longitudinal, multicenter cohort study called RHODOLITE to gather consistent data on characteristics, molecular diagnostics, treatment, disease progression, and patient-reported outcomes for individuals with primary and secondary myelofibrosis and anemia in Germany. The study aims to understand treatment patterns and changes over time among patients starting or continuing systemic therapy for myelofibrosis. RHODOLITE is an open-label, non-interventional observational study without assigned treatments. Patients will be followed for up to three years to document all systemic treatments and therapy sequences received in routine clinical care. The study also involves collaboration with the German Study Group for Myeloproliferative Neoplasms GSG-MPN Bioregistry, which will provide additional long-term follow-up for at least five years. Participants will provide data on their health, treatments, and quality of life during the study. Health-related quality of life and myelofibrosis-related symptoms will be assessed through patient-reported outcomes for up to three years. Researchers will monitor hematologic and splenic responses, overall response rates, progression-free and overall survival, and document systemic treatment courses. Participation involves providing informed consent and completing quality of life assessments alongside routine clinical data collection.

Research Platform Myelofibrosis and Anemia