Highlights from the SWG

The creation of the HM-PRO in UK English was a long process that employed hundreds of patients with hematological malignancies, hematologists from the UK, international patient representatives and researchers in a teamwork since 2012. The final validation according to international standards was performed and finally the newly developed tool was presented within the annual EHA congress in 2018. In addition, the tool is being translated and will be available in over 10 international languages by the end of 2019.

Another important project initiated in 2017 is the collaboration with the Italian QOL-ONE Association to create a new instrument for the measurement of PROs in Gaucher Disease.

Links to EHA-SWG websites to HM-PRO project:                                       

https://www.lymphomas.org.uk/lymphoma-trialslink/find-trial/lymphoma-hm-pro-trial
https://www.myeloma.org.uk/news/uk-myeloma-patients-invited-to-test-new-quality-of-life-questionnaire/
http://www.mpnvoice.org.uk/documents/Survey%20documents/MPN_Voice_EHA_Development_of_a_Questionnaire.pdf
https://mdspatientsupport.org.uk/eha-symptoms-and-quality-of-life-survey-please-complete

Clinical trials promoted by or involving the SWG:

  • HM-PRO - The EUROPEAN HEMATOLOGY ASSOCIATION Scientific Working Group “QUALITY OF LIFE AND SYMPTOMS” Project to Develop Treatment–Related Patient-Reported Outcome Measure in Haematological Malignancies for Use in Clinical Practice.
  • QOL-ONE PRO1G - Observational Study to Develop a Treatment–Related Patient-Reported Outcome Measure in Gaucher Disease.

This Scientific Working Group has published guidelines on Patient-Reported Outcomes in Hematology