Highlights from the SWG
- In collaboration with the MPN group in Israel, a practice survey regarding Ruxolitinib therapy in MF was undertaken and published, and a survey in erythrocytosis is also underway.
- A collaboration to prospectively survey aspirin and thrombosis in CALR-positive patients has been submitted and published.
- The SWG supported a meeting of a pan-EU patient advocacy group in Frankfurt.
- The SWG supports the MEASURES study, a quality-of-life assessment study without an investigation medical product. This was launched at the 2014 meeting and is on-going and recruiting well.
- The SWG completed a retrospective review of patients (<25 years old) at diagnosis and has commenced a prospective study. There was a poster both at ASH and EHA 2018 meetings and the review is in press in Haematologica.
- A first-line PV study is progressing to final contract stage and will be launched this year.
Future plans:
- Developing educational cases available online on the EHA e-learning platform.
- Developing a more formal list of centers and experts willing to host trainees.
- Hosting a second SWG meeting in 2020.
- Proposing guidelines on investigation and management of erythrocytosis and potentially a position statement for Ruxolitinib resistance.
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