Tracking Patients With Myelofibrosis and Anemia Over Time in Germany
Follows adults with myelofibrosis and anemia, recording their health and treatment over time.
Plain-language title generated from the registry record
Registry title: Research Platform Myelofibrosis and Anemia
Key facts
- Where
- Multiple Locations, GermanySee the site
Where in Germany
- Multiple sites all over germanyMultiple Locations, GermanyTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- iOMEDICO AG
- Trial code
- NCT06976918
- Record updated
- 5 June 2026
- Original description
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.Read full original descriptionShow less
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 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.
Inclusion: 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: No systemic therapy for diagnosed primary or secondary MF; Planned allogenic stem cell transplantation (allo-SCT) or active participation in an interventional clinical trial.