Clinical Research Platform on Treatment, Quality of Life and Outcome of Patients With Primary and Secondary Myelofibrosis and Anemia Who Are JAK Inhibitor Treatment-naïve or JAK Inhibitor Treatment-experienced (RHODOLITE)
The purpose of the project is to set up a national, prospective, longitudinal, multicenter cohort study, a tumor registry platform, to document uniform data on characteristics, molecular diagnostics, treatment and course of disease and to collect patient-reported outcomes for patients with primary and secondary myelofibrosis and anemia in Germany.
• Confirmed diagnosis of primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis (MF) (Note: diagnosis according to WHO-2017, ICC-2022 or WHO-2022 or IWG-MRT criteria, respectively).
• Diagnosis of anemia at the time of enrollment as per individual, clinical assessment by the local physician.
• Start of first or subsequent systemic treatment for MF.
• Informed consent and registration for the GSG-MPN Bioregistry.
• Willingness and capability to participate in PRO assessment.
• Signed and dated informed consent form for RHODOLITE at the latest six weeks after start of the respective systemic MF treatment.