Primary MyelofibrosisSecondary MyelofibrosisPost-polycythemia Vera MyelofibrosisPost-essential Thrombocythemia MyelofibrosisAnemiaMyelofibrosis; AnemiaMyelofibrosis
Study summary
The purpose of the project is to set up a national, prospective, longitudinal, multicenter cohort study, a tumor research 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.
Eligibility
Sex
ALL
Min age
18 Years
Max age
—
Healthy volunteers
No
Inclusion Criteria:
* 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.
Exclusion Criteria:
* No systemic therapy for diagnosed primary or secondary MF.
* Planned allogenic stem cell transplantation (allo-SCT) or active participation in an interventional clinical trial.
Primary outcome measure(s)
Documentation of systemic treatment for MF and therapy sequences — 3 years per patient Types and frequencies of systemic treatment for MF during observation time.
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
We use cookies to analyse site traffic and improve your experience. With your consent, we may also use cookies for advertising. You can change your choice at any time.