Quality of life
The goals of the SWG are:
- To promote the evaluation of patient reported outcomes (PROs) in hematology in daily clinical practice and in clinical trial.
- To foster international networking of hematologists, researchers, patient representatives and patient research partners to share their interest in the development and clinical application of PROs.
- To facilitate educational activities in PRO assessment.
- To promote PRO research in hematology.
Research activities since 2012 include the creation of a new tool for the evaluation of PROs in patients with hematological malignancies (HM-PRO). The development of the HM-PRO has been finalized in 2018 and the tool was presented within the annual EHA congress in Stockholm. In 2018 the initiation of translations of HM-PRO into several international languages with linguistic and cultural validations have been initiated.
The SWG has been involved in research in the field of impact of disease and treatment in patients with congenital pyruvate kinase deficiency and in Gaucher’s disease.
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